The Mighty thinks they want a conversation. Now. After being called out literally from day one about their problematic ableism and centering of the same voices we always hear and inspiration porn.
Okay. So. Here's the deal, The Mighty.
You've set off some fucking BEAUTIFUL PTSD because you can't even step in & say "not all coping mechanisms are ok, actually". I mean, you should really have someone catching "huh, this actually isn't ok to say about people who aren't yourself, especially not publicly" but then you wouldn't have content. That's the majority of your content.
But by following that line, by not drawing a line (and yes, you DO need to do so explicitly, and you need to enforce it on your social media presence and on your blog, both comments and submissions) you are saying to disabled people, MANY of whom are abuse survivors that since it was done by parents and caregivers it was ok.
That is the space you are holding. A safe space for abusers. That doesn't mean you are all abusers, so let go of your pearls. You asked for my input now actually listen. Prove me wrong. I think you're disingenuous as hell, & I'm almost never wrong. Be the exception.
You need to promote disabled authors, assuming there are any left who will work with you. Particularly multiply marginalized authors. And you need to PAY THEM. Not just the feel good inspiration porn saccharine crap. You are all "well that's real though" when parents use your site to humiliate their kids. Why is it not "well that's real though" when we're raw and honest with you?
I want an actual answer but, again, I don't have any illusions here, if you cared to stop fucking up you would have done so long ago.
The moment for the conversation is well before the castle is on fire, kids, & you're running to the innermost keep.
Spaces that are doing it right? Are spaces that make your primary demographic (paaaaaarents, face it. You cater to paaaaaarents. Not people who happen to have produced a child with a disability. Parents who act like their child is an imposition done at them because the world hates them, woe unto them) sad pants. That reflects badly on the culture you promote.
What's fucking hilarious? You've repeatedly refused to even read things I've written (including the thing literally everyone wants to reprint). But if you knew me in my Secret Identity as a gymnastics coach & judge, former gymnast, dancer, martial artist, and archer you'd wet yourself trying to write up what an "inspiration" I am. I'm not a person to you either way (isn't this lack of illusion and lies refreshing?) but you'd be looking to dehumanize me the other way.
Your formula is transparent. You should be embarrassed.
You need to reach out to radical people even though they make you sad. YOU need to grow here. We have been yelling at the brick wall that is you for ages. Now you need to cleanse.
Or you can, like, dismantle. Or at least be HONEST and label yourself as The Central Repository of Inspiration Porn and Martyr Parent Stories.
But this is NOT in my name, and you pretending it is is insulting.
I don't think you are sincere & I don't think you'll respond to this, or any of the other criticism in a meaningful way. Prove me wrong.
-K
Incidentally, this post is a $500 value at my typical rates at your billing scheme. Rates are calculated based on number of words, number of times I had to go back and delete because people can't cope with people not kissing their ass, how big a pain in the ass the client is, how presumptuous they are, and how disingenuous I think they are. I know you won't pay me, but just thought you should know how much you're demanding for free.
Wednesday, December 23, 2015
Thursday, December 17, 2015
survivors matter more than abusers. behave accordingly.
Today would have been my dead mother's 57th birthday (oops! 59th! Clearly I'm mostly fine since I no longer exactly remember) if she hadn't loved cigarettes more than anything else (her words). I'm actually fine. But damn are people full of terrible things to say to people who've gone no contact with parents.
I see the sympathy when I talk about my parents. I hear you say the platitudes. In theory, all the right words (not necessarily the right words for me, but the words a book would tell you are the right ones). You get uncomfortable because you should. But then comes the part where you start screwing up. Then come the 'buts'.
"But you'll miss her when she's dead."
"But she was doing her best."
"Honor your father and mother."
"Well maybe your stepdad was abusing her too, have some sympathy."
"You may not regret cutting her off now, but you will."
"What if someone felt they needed to cut you off for their safety? Would that be fair?"
"She's your mother."
These are at best misguided awkward things people who want everything to be peachy and shiny say. At worst they are intentional barbs. But they are not the right thing to say.
No, I don't miss her. I am profoundly relieved. I don't care if she was doing her best--if that was her best it wasn't good enough. If I am "doing my best" and drop a kid on their head, it wasn't good enough, but a lifetime subscription to Nightmare of the Week Club from the C-PTSD guild needs to be forgiven because of genetics? No.
Don't preach the bible at me because it is not my book & you will not get me to allow abusers to be close to me because of a supernatural being I don't believe in & wouldn't worship if that's what it wanted. I don't care if my stepdad was abusing her too, displacement isn't the answer. Owning your shit is. If someone cuts me out, okay that's fine, it isn't about fair, it's about people need to be able to do what they need to do. It doesn't matter that she's my mother because she's also an abuser & utterly unsafe.
So. Don't say these things to people who have cut parents out of their lives. We've heard them before. I will cheerily, and I do mean with a big grin, tell you to go fuck your sanctimonious self & go about my day, because I am at that place. Not everyone is.
These statements are gas lighting survivors about our self knowledge to keep ourselves safe. This is, again, an area in which I can tell you to fuck off. But other people? It could send them to months of nightmares. It could set off yet another cycle of "trying to get along with mom--mom is a piece of shit--get too beaten down to extricate". You could be guilting someone into spending a holiday with someone who wants to, has tried to, and may succeed at killing them.
Don't think about our abusers' feelings before you opine. Think about ours. Think about how we are probably downplaying it to you. Think about how we are the person you are saying it to. We have been the wronged party, and often had that twisted and turned by people who think us having boundaries is wronging them. We are taught that self preservation is wronging people.
Think about that. Don't undermine survivors' hard-won safety mechanisms. If you can't help yourself, you need to go be not around survivors because you, too, are not safe. And need to fuck off.
I see the sympathy when I talk about my parents. I hear you say the platitudes. In theory, all the right words (not necessarily the right words for me, but the words a book would tell you are the right ones). You get uncomfortable because you should. But then comes the part where you start screwing up. Then come the 'buts'.
"But you'll miss her when she's dead."
"But she was doing her best."
"Honor your father and mother."
"Well maybe your stepdad was abusing her too, have some sympathy."
"You may not regret cutting her off now, but you will."
"What if someone felt they needed to cut you off for their safety? Would that be fair?"
"She's your mother."
These are at best misguided awkward things people who want everything to be peachy and shiny say. At worst they are intentional barbs. But they are not the right thing to say.
No, I don't miss her. I am profoundly relieved. I don't care if she was doing her best--if that was her best it wasn't good enough. If I am "doing my best" and drop a kid on their head, it wasn't good enough, but a lifetime subscription to Nightmare of the Week Club from the C-PTSD guild needs to be forgiven because of genetics? No.
Don't preach the bible at me because it is not my book & you will not get me to allow abusers to be close to me because of a supernatural being I don't believe in & wouldn't worship if that's what it wanted. I don't care if my stepdad was abusing her too, displacement isn't the answer. Owning your shit is. If someone cuts me out, okay that's fine, it isn't about fair, it's about people need to be able to do what they need to do. It doesn't matter that she's my mother because she's also an abuser & utterly unsafe.
So. Don't say these things to people who have cut parents out of their lives. We've heard them before. I will cheerily, and I do mean with a big grin, tell you to go fuck your sanctimonious self & go about my day, because I am at that place. Not everyone is.
These statements are gas lighting survivors about our self knowledge to keep ourselves safe. This is, again, an area in which I can tell you to fuck off. But other people? It could send them to months of nightmares. It could set off yet another cycle of "trying to get along with mom--mom is a piece of shit--get too beaten down to extricate". You could be guilting someone into spending a holiday with someone who wants to, has tried to, and may succeed at killing them.
Don't think about our abusers' feelings before you opine. Think about ours. Think about how we are probably downplaying it to you. Think about how we are the person you are saying it to. We have been the wronged party, and often had that twisted and turned by people who think us having boundaries is wronging them. We are taught that self preservation is wronging people.
Think about that. Don't undermine survivors' hard-won safety mechanisms. If you can't help yourself, you need to go be not around survivors because you, too, are not safe. And need to fuck off.
Thursday, November 26, 2015
Borrowing Praxis
This becomes relevant every now and again, when people decide to have a problem with people who need more significant or obvious communication supports. The stars have aligned & I can write about it at a time that it's relevant to the broader community.
One of the things Autistic people know that doesn't make it into the literature is that we have difficulty with movement. Not necessarily clumsiness (though that is common), but inertia. Stopping is hard. Starting is hard. Executive dysfunction to a rather extreme and annoying extent. So, we have people who need support for typing, some members of our community are very prompt dependent, et cetera.
But a lot of us need to borrow praxis or initiation. It's a Thing. On a fairly regular basis my roommate & I will be standing at the top of the stairs and one of us needs tea or coffee, the other needs food. So whoever is having more trouble getting started will ask if they can come down at the same time. Or we both are stuck & need to go at the same time to borrow, so to speak, the other person's intention to go down the stairs. Thus we both go to the kitchen.
Am I making her tea? Is she making my macaroni and cheese? An awful lot of the arguments against supported typing go with "well, the supporter is the author of the communication". Someone standing behind someone else, touching their shoulder, is hardly showing evidence of writing with the other person's hand, any more than my roommate is making my mac & cheese because her movement helped me initiate my movement to get to the kitchen. Or maybe I'm making her tea.
No wait, that's ridiculous.
I don't even think this is autistic-specific phenomenon, though we are more likely to have to borrow others' movement. There's all sorts of psychology literature on how people perform better and easier among liked peers. They may not actively need a trusted person around to communicate clearly, they may not require someone else's momentum to get down the stairs (I keep saying that because it's my actual existence), but all people benefit from others. Study groups are basically this exact same thing, on a cognitive level (until they turn into socializing with a pile of books present).
Being skeptical of supported typing requires being skeptical of a whole lot of movement and getting shit done that I do, that many of my friends do, that non Autistic people do, is the point here. Taking a kick start from other beings is a thing we all do. It isn't valid when able people do it, sort of valid when people with fewer support needs do it, and non valid when people with more intense support needs do it. It's the same thing regardless, & it's valid or it's not valid.
And if it's not valid, I've been making an awful lot of tea with someone else's hands.
One of the things Autistic people know that doesn't make it into the literature is that we have difficulty with movement. Not necessarily clumsiness (though that is common), but inertia. Stopping is hard. Starting is hard. Executive dysfunction to a rather extreme and annoying extent. So, we have people who need support for typing, some members of our community are very prompt dependent, et cetera.
But a lot of us need to borrow praxis or initiation. It's a Thing. On a fairly regular basis my roommate & I will be standing at the top of the stairs and one of us needs tea or coffee, the other needs food. So whoever is having more trouble getting started will ask if they can come down at the same time. Or we both are stuck & need to go at the same time to borrow, so to speak, the other person's intention to go down the stairs. Thus we both go to the kitchen.
Am I making her tea? Is she making my macaroni and cheese? An awful lot of the arguments against supported typing go with "well, the supporter is the author of the communication". Someone standing behind someone else, touching their shoulder, is hardly showing evidence of writing with the other person's hand, any more than my roommate is making my mac & cheese because her movement helped me initiate my movement to get to the kitchen. Or maybe I'm making her tea.
No wait, that's ridiculous.
I don't even think this is autistic-specific phenomenon, though we are more likely to have to borrow others' movement. There's all sorts of psychology literature on how people perform better and easier among liked peers. They may not actively need a trusted person around to communicate clearly, they may not require someone else's momentum to get down the stairs (I keep saying that because it's my actual existence), but all people benefit from others. Study groups are basically this exact same thing, on a cognitive level (until they turn into socializing with a pile of books present).
Being skeptical of supported typing requires being skeptical of a whole lot of movement and getting shit done that I do, that many of my friends do, that non Autistic people do, is the point here. Taking a kick start from other beings is a thing we all do. It isn't valid when able people do it, sort of valid when people with fewer support needs do it, and non valid when people with more intense support needs do it. It's the same thing regardless, & it's valid or it's not valid.
And if it's not valid, I've been making an awful lot of tea with someone else's hands.
Thursday, October 15, 2015
Activism & the Overton Window. You're welcome.
I'm going to tell you something frustrating about being me:
I will say something, and people will act like it's completely outlandish. Something like, oh, disabled people deserve civil rights. Making everywhere an epilepsy nightmare is violence. Things need to be more cognitively accessible. Autistic rights are human rights, even if we never pass. That compliance training is by it's very nature abusive.
And then you'd think that I said that babies are delicious and we should burn down everything and start over! The way people react to these things I posit that are direct extensions of "we're people, dammit"...they're the reactions of people who are threatened. It isn't laughing or blowing off, no, it's more like actual threats of violence. It's a good time. Like I said something that is dangerous and absurd.
Then, about 6 months later, maybe a year later, someone else will say it. Someone whiter, or someone male, or someone with relative class privilege, someone considered more "respectable". And suddenly this thing I've been saying for ages sounds reasonable. Maybe we should consider that! Sure, I've moved on to something even more ridiculous, like that bodily autonomy means everyone or something, but the thing that got me death threats and called a crazy bitch or whatever is now being seriously considered.
That's because a function of activists is to shift the Overton Window. It's a thankless and scary function, but it is a thing we do.
What is the Overton Window? It's the fancy pants rhetorical term for the ideas that humans will consider. Anything outside this idea is seen as extreme, reactionary, outlandish. You can see the Overton Window in practice if you have followed 20th-21st century USA politics. The Tea Party in particular dragged the Overton Window way to the right, while supposed progressives have been trying to be 'moderate'. The thing is...being 'moderate' and presented as an extreme means the window shifts. You never have actual extremes, and you see the ideas and policies that are tolerated shifting according to what people see as the reasonable range.
So. I fulfill the function of saying "Actually, that isn't even a little bit extreme, let me show you some extreme you can't even handle this shit", and we lose somewhat less ground to people who are hell bent on curtailing our rights, because I am not a sellout like the US Democrats, for example. And there are always a few people willing to say "that's not unthinkable, really". And so the range of discourse shifts & maybe some day the idea that autism isn't all about our parents will be considered a reasonable position.
I will say something, and people will act like it's completely outlandish. Something like, oh, disabled people deserve civil rights. Making everywhere an epilepsy nightmare is violence. Things need to be more cognitively accessible. Autistic rights are human rights, even if we never pass. That compliance training is by it's very nature abusive.
And then you'd think that I said that babies are delicious and we should burn down everything and start over! The way people react to these things I posit that are direct extensions of "we're people, dammit"...they're the reactions of people who are threatened. It isn't laughing or blowing off, no, it's more like actual threats of violence. It's a good time. Like I said something that is dangerous and absurd.
Then, about 6 months later, maybe a year later, someone else will say it. Someone whiter, or someone male, or someone with relative class privilege, someone considered more "respectable". And suddenly this thing I've been saying for ages sounds reasonable. Maybe we should consider that! Sure, I've moved on to something even more ridiculous, like that bodily autonomy means everyone or something, but the thing that got me death threats and called a crazy bitch or whatever is now being seriously considered.
That's because a function of activists is to shift the Overton Window. It's a thankless and scary function, but it is a thing we do.
What is the Overton Window? It's the fancy pants rhetorical term for the ideas that humans will consider. Anything outside this idea is seen as extreme, reactionary, outlandish. You can see the Overton Window in practice if you have followed 20th-21st century USA politics. The Tea Party in particular dragged the Overton Window way to the right, while supposed progressives have been trying to be 'moderate'. The thing is...being 'moderate' and presented as an extreme means the window shifts. You never have actual extremes, and you see the ideas and policies that are tolerated shifting according to what people see as the reasonable range.
So. I fulfill the function of saying "Actually, that isn't even a little bit extreme, let me show you some extreme you can't even handle this shit", and we lose somewhat less ground to people who are hell bent on curtailing our rights, because I am not a sellout like the US Democrats, for example. And there are always a few people willing to say "that's not unthinkable, really". And so the range of discourse shifts & maybe some day the idea that autism isn't all about our parents will be considered a reasonable position.
Sunday, September 27, 2015
So much for "we learned from our errors" and "we promise to be better"
Background:
In 2008 I went to the Autcom conference, as supposedly they’re a good conference and good organization that doesn’t suck. Their board member Gail GIllingham Wylie followed me around with a flash camera, knowing that I have photosensitive epilepsy. THe parent & support person of a person I was supposed to be presenting with also really crossed the line; her son had a lot of lighting effects in his power point, I said no don’t, epilepsy, & she said to just choose to not have epilepsy, I have speech so obviously I can just, you know, not. Irony: that panel was supposed to be about not making assumptions about one ability or disability based on others.
THey were not sorry until very recently, because it wasn’t politically expedient to not be sorry anymore (I stand by that hypothesis in light of their current behavior). To prove they were dedicated to doing better, they were going to take these steps:
-actually say the S word (sorry is the s word)
-indicate they meant it
-by funding attendees from underrepresented groups
-and actually meeting my godsdamned access needs.
Um. They did one of these things. I was worried about the access needs thing bc not a single thing went out indicating flashing things aren’t ok to presenters or to attendees & I made it crystal clear that because of their history (GGW did not lose her board position for assaulting me with a deadly weapon, nor was she asked to stop by anyone she listened to. Neither did anyone from AutCom say they were sorry they condoned hurting me with their silence, although they did have members throw big whiny fits all over because I don’t drop that shit for obvious reasons).
I almost didn’t go. I almost let them eat the cost of the plane ticket, but they supposedly learned. Maybe they didn't send out the guidelines in advance because they're disorganized?
No.
We are not cool at all.
On Friday night another attendee, who I am not naming because that’s actually not necessary, took flash pictures all over the everywhere. The insert of the conference materials said no flash photography, there was time devoted to the no flash photography speech, etc etc. I said if he did it again I’d shove the camera up his nose, which is not a literal thing & my go-to for such things because it can’t be taken seriously as a threat yet is a ‘no really I mean it stop’ thing to say. He was upset & this is when his support person decided to acknowledge the rule (support people! If the folks you support need assistance in respecting rules, that is so very part of your job! To say they just can’t is presuming incompetence!). I made sure the president of AutCom knew, as she’s the one who made promises; the rest of the people I talked to dropped out of the conversation (which is why I almost decided not to go at the last minute).
And this is where the timeline gets fuzzy because I’m time agnosiac anyway & It’s a big mess of what the actual fuck. Everything happened; I might have the order wrong. Bear in mind this is an organization that made me promises to indicate they learned & are going to do better. They had 7 years to figure it out.
Just before heading down to breakfast, my conference roommate Alyssa & I got a text message from someone we were going to present with, asking if she could come talk to us. Yes, of course. Beth comes down & sayeth unto us that there’s a big argument outside her room between Emily Titon (President of Autcom), Sandi McClellan (a past president), & Linda Rammler (honestly I have no idea what her position is except volunteer). The power structure in AutCom is really weird, as the president should be able to make promises & agreements & be backed up. That isn’t a thing. Emily had told me anyone that flashed would be removed. I didn’t believe her because I’m aware of how people (read as: AutCom. They have their own prejudiced preferences) are and honestly that’s a nuclear option anyway. She was trying to fix the night before.
So that’s exciting.
When I headed downstairs with Alyssa to find breakfast, we encounter another access barrier: there is an attendee who touches everyone as they go past her. She is in the doorway. The other door does not open. It is impossible to avoid her & when asked not to touch people she ignores them (or at least she ignored my wishes; she broke into a run to touch us when we were trying to take evasive action, as saying "don't touch me" did not work). Do not violate my boundaries first thing in the morning, or indeed ever. I may use my teacher voice about how godsdamn are you people ever terrible at access. Because, um, you are. And I did. Touching me isn’t ok, flashing isn’t ok.
Apparently having boundaries isn’t allowed any more than having photosensitive epilepsy is (you want to know where I got the idea I’m not allowed access needs? It’s organizations that are supposedly ours. Are you proud?)
Like I said, now is when order gets fuzzy. So let’s just hit some highlights. People representing AutCom involved in this clusterfuck include Linda Rammler & Sandi McClennan as already indicated, as well as Anne & Eric Bakeman. I am unclear on their actual titles or the power they are supposed to have because they were wielding a lot, and things were not ok. If I specify an individual said something, by name, that means I am certain that person is who said or did it. Also for the unfamiliar, AutCom supposedly supports civil rights and has tshirts that say “presume competence” and has done much of their work with issues that effect people with more obvious or intense support needs and AAC users. Sandi was wearing one of those shirts and I believe Anne was as well.
I had many well projected (thank you choir!) words about how they can’t manage to keep a fucking promise about a fucking common access need. Yes, I swear. I did not swear at or about anyone but about behavior. People may not like profanity but it is not an attack unless used as an attack.
Attacks I endured from AutCom include:
-persistent shortening of my name without permission (this is a dominance move & is extremely disrespectful. It’s more disrespectful down a power gradient)
-Sandi telling me that I didn’t belong at AutCom, because I insist on promises being kept & on my access needs being respected.
-Being told that I was irrational for defending my access needs. This is gaslighting and it is unacceptable.
-Continual ignoring of ‘do not call me <Shortened name>. Apparently this boundary is also irrational.
-Being told that my need to not be faced with seizure triggers is less important than someone’s attachment to his camera.
-Being told that my access need not to be faced with seizure triggers is less important than board member’s unwilligness to talk to the flash camera person themselves; it's too much work to enforce the rules they agreed to
-Being told that my access needs would literally be the end of AutCom.
Not-attacks-but-still-not-ok included:
-Tone policing.
-Anne condescendingly suggested I try saying please.
-Very many iterations of “you need to politely fix it” when I had been promised I would not have to fix things, as if I have to fix them it means they didn’t actually address the issue.
-Being told to not use ‘uncomfortable language’ (meaning, ‘fuck’) while simultaneously shortening my name and telling my my access needs are not real.
-Every indication that there is no way I could be nice enough about their godsdamned access barrier that i shouldn’t have had to deal with and that they promised I wouldn’t have to deal with.
-In a real ironic twist, the folks wearing “presume competence” shirts told me the man with the camera didn’t understand, couldn’t understand, he is mostly nonspeaking (they said nonverbal. I find the distinction important for respect reasons) and has been institutionalized so he can’t possibly be held to the rule. Eric Bakeman was a real pusher of this, as was Sandi.
-Continual pushing of the idea that a grownass adult and his grownass support person cannot be expected to follow a simple rule.
-The undercurrent of “Your support needs don’t real”
-When I requested to go the fuck to home since I apparently don’t belong there, they told me I owed them presentations because they flew me out there. That was not the deal. The deal was I would give them a second chance. I don’t owe anyone shit.
-being asked the same question over and over and having my answer ignored. I don’t want a fake apology. I want people to not fuck up. I can only say that in so many ways.
-having words put in my mouth that I did not say. Don’t do that.
-consistently ignoring how apologies work (say you’re sorry, say what you’re sorry for, do a thing to try to fix, make a plan to not do again, go forth & actually do it) while doing the attacky things listed above.
-”all access needs matter” conflation of intensity. Everyone’s access matters. Potentially fatal things really do need to come first in common areas. Bodily autonomy, too, in the case of the woman insisting on touching everyone.
During this I called Emily Titon on the phone & said, effectively, "you. here. now." but as soon as she got there she was whisked away for a reason I do not know. So the president of AutCom, who made these agreements, brokered these arrangements, missed all the conflict about them. She was just whooshed off into the ether as soon as she got downstairs.
During this I called Emily Titon on the phone & said, effectively, "you. here. now." but as soon as she got there she was whisked away for a reason I do not know. So the president of AutCom, who made these agreements, brokered these arrangements, missed all the conflict about them. She was just whooshed off into the ether as soon as she got downstairs.
At some point Linda Rammler also threw a cup of coffee at (actually at) Beth, though that was not where I was. Upon being told that expecting my access needs to be met was irrational, I did also throw a cup. Mine was empty. It hit exactly where I was aiming, 10 feet above & 4 feet to the right of all people. She is not held responsible for this that I saw, although I was told to just not have epilepsy then, repeatedly, in many different ways.
Other things that I was told happened but did not personally witness included non-competence-presuming people threatening to ragequit if Emily held AutCom to their rules. They said that respecting my access needs would be the end of AutCom to my face and possibly elsewhere as well. Linda Rammler went so far as to say that enforcing the rules would prove Simon Baron-Cohen right. This is a nasty, hateful thing to say.
The gaslighting started basically immediately, also. But the thing is: there are witnesses. There were a dozen people at my side telling them they were wrong, they were fucking up, they were violating the first rule of holes (stop digging), that they were violating their own claimed values (“presume competence” and “civil rights for all”). They gave no fucks about my civil rights & said that enforcing them would destroy them. They said that the man who flashed the camera is incompetent. Those are things they did.
Apparently the man with the camera, incidentally, was sorry as soon as he understood the situation, he wanted to apologize. Yes, okay. I am actually pretty fucking reasonable. He is sorry, will not do again, kept camera in his room, we’re cool. As long as it doesn’t happen again, we’re fine.
There were many many witnesses to what went on. Loads of witnesses. Other attendees jumped in with their examples of rules being violated causing a hazardous environment for them (numerous people had issues with the touching, people were getting headaches from people ignoring the scent free policy). It’s like if you can express your needs orally, AutCom has a policy that they’re preferences. Autism does not work that way. They should know that but are not displaying an understanding of that.
After the panel I was on about parents and autistics collaborating to bring meaningful social change, Sandi did accost me (yes, it felt like that. There was no escape & I didn’t want to speak with her) to nonpologize. I say nonpologize because the words “I’m sorry” never escaped her lips, nor did acknowledgement that telling someone that they don’t belong somewhere is fucked up, nor did acknowledgement that telling someone their access needs are irrational is more fucked up. “I handled it very badly” is the closest she came to that & I felt pressured to say words that I don’t mean & therefore didn’t say them. It wasn't an apology; it was a litany of excuses. We aren’t cool. We aren’t cool at all.
It’s never cool to fly someone across the country to show them how actually you haven’t learned at all. That isn’t how “we’re sorry” works. I know I’m not allowed access needs, & this is the latest example that I can give people.. Flying me across the US to show me how much you don’t care to do better is phenomenally unacceptable. Making liars of my friends is unacceptable. Presuming incompetence when it’s easier & feels like an absolution of responsibility is never cool.
We are not cool at all.
Other people who witnessed this, and oh were there ever loads, may be writing their accounts as well. I am not the person to tell that my access needs are hard. I don't want to hear it, I already know I'm not allowed them. I fight every day for your right to supports, at least pretend you care about mine.
Saturday, September 19, 2015
Movement teachers: I am your dream student. I am your nightmare student.
I highly doubt anyone who has or will endeavor to teach me movement things will ever read this, but on the off chance they do. It may also help someone else who is trying to teach sports or dance or other similar things to someone who does movement like I do.Movement teachers: on the surface I am your dream student.
I'll walk in. You'll show me basics. Or have someone show me basics. They will do them at the same time I do, so I can exactly follow. I'm echopraxic, you see. If I have someone to exactly follow? I can do that. I can make my body do exactly what they do--or as close to exactly as different builds allow.
You will probably think that I am talented. I probably am not. I am echopraxic and I have a big library of movement to draw from. So as long as I have someone to follow I can look comfortable with the things.
You may be tempted to skip steps. You may forget there's things I haven't learned. I know how to do a lot of things with my body because of years of dance, gymnastics, & team sports. This is why I can give you the impression I have an aptitude: because if it is on the ground or in the air I have probably done something similar. I've done gymnastics. I've spun a flag & marched at the same time. I've done some ridiculous number of styles of dance. I've played basketball on feet and on wheels. Whatever you're showing me, I'm sure to have a bit of muscle memory that relates enough that I can copy you or more advanced people.
Here's where I'm your nightmare:
I can only copy for a substantial amount of time. Yes, I can do exactly what someone else is doing while they do it. But until I've over learned the movement, I will be inconsistent. Things will be in the wrong place. Things will be in bafflingly wrong places the first 200 times I try to do the thing without mimicking. The next 200 times I have to talk myself through it. I may say one thing and do another. I will find new & exciting ways to do the wrong thing.
Did you skip steps? Or forget that I hadn't learned a thing? This nightmare trait you can blame other movement instructors for, as it isn't a natural part of my makeup : I will still try to copy. I will still try to figure it out without asking. I may not know how to do the thing, but if you're asking me to I am going to think I'm supposed to. I know I haven't been taught it, but asking has rarely gone well. Clearly someone who knows what they're talking about thinks I already know it. Asking gets all sorts of belittling when you're asking about something 'easy' and can do things that are 'hard'. I do not need that in my life. It's easier to watch, copy, approximate. It may be more physically dangerous but I am more confident in my ability to avoid injury with my body than I am with instructors' ability to not be a jerk if I can't do something they forgot to teach me.
It takes a very long time for me to get things consistently in my motor memory. I'll do it extremely well Monday. I'll do it extremely well Wednesday. Friday it'll be all wrong. My body forgets which way to go, or which foot I do things with, or what order things happen in. It doesn't just forget new things. It forgets old things. A couple years ago my body forgot how to do a backhandspring--something I've been doing well over half my life.
And I am your surreal dream:
I'll learn to approximate skills. They'll be okay if I talk myself through them. Or maybe I can't do the skills at all. And then for some reason I won't even attempt them for months. Suddenly I get the ball at that spot I can't shoot from, or that dance move will become relevant. Without hesitating, thinking, anything my body will do it. It may even do it flawlessly. And you'll be confused. You didn't think I was holding out on you but maybe I was.
I was not holding out on you. My motor planning really works that way. Sometimes I have to hack it by putting myself in a position where doing something automatically is the easy option. Thinking about it hasn't worked, but letting natural movement suddenly lets my body do what it knows.
I may lose skills or movement patterns that are easy, but not the more complicated ones. There may be rhyme and reason to this, but I haven't been able to find it & neither has anyone else. I can tell you why specific combinations of movements or individual skills are hard but not why I lose things.
We're back to why, if you are willing to work with me, I'm your dream student:
I'm motivated. If I stick around long enough to master something that confused me, you are likely stuck with me. I don't stop doing things because they're hard; I was the kid who couldn't write my name. Who literally tripped on my own feet. Who couldn't organize movement well enough to get a book out of a desk without spilling its entire contents. Who couldn't kick the ball in kickball or serve in volleyball. Who only made the basketball team because it's no cut. Who got dropped from basic level tumbling classes until I spent a couple years with a book in the park painstakingly teaching myself cartwheels & walkovers, because no one else thought I could learn it. Who could not eat my food without also wearing it.
None of that is exaggeration. I was born dyspraxic. I no longer function as dyspraxic. I rewired my brain on my own. You have not met motivation & stubbornness until you have met me. In my life as a movement teacher, I say "hard work beats talent because hard work shows up" and I will always show up. I may get frustrated, but I want to work through it. I've made "beating my coordination challenges into submission" a way of life, & I will continue showing up unless you make me unwelcome. In which case I will take my motivation, stubbornness, always trying to be better somewhere else. But "hard work beats talent because hard work shows up" applies on all sides here, & take it from me, beating talent with hard work starts as a nightmare but it turns into a pretty sweet dream.
Sunday, August 16, 2015
Stop Proving me RIGHT. (more on "A Year in the Life of Autism" & their devotion to being screwups)
I was actually gentler than I wanted to be yesterday. So. Now punches don't get pulled.
"A Year in the Life of Autism", which is the completely inaccessible and boring as hell v-log of some whiny autism parents who think it's ok to say they "live with autism" but that their son "has autism" but is not Autistic (they decided this) decided to hit rock bottom and start digging. Able people: you may not call yourselves this. Okay? You do not "live with autism", you cannot write about anything in the life "of autism". You are not autistic. You do not have special insight into being Autistic because you've got an autistic kid. Stop.
They promoted a campaign called "silent selfie", where whiny autism parents posted selfies of themselves with hands over their mouths. Never mind that this symbol, as I said yesterday, was used to raise awareness of things like sexual violence and human trafficking. They want it too! This is to 'support autism'. You can tell because of how they treat autistic people.
Namely, by silencing. Irony much?
Not once but twice.
Okay, Dean & Amy, here's the deal: you posted about wanting to make a name for yourselves in the autism communities. You did. Congrats. You have made a name for yourselves as just another bigoted entitled mommy & daddy blog. You're special in that you manage to be both a sensory nightmare and dreadfully boring v-loggers. That's your claim to being different. Other than that, you're entirely like every other Woe Unto Me!! parent blog out there.
Here's the rest of that deal: if you want a name for yourselves, you're going to get criticized. If you seek fame, people who disagree with you will also know who you are. They will tell you that you're wrong. If you can't cope with people saying you're being ableist & wrong, don't do it so damn publicly. Anything you put in the public sphere is...public. And if you're going to talk about autism, expect autistic people to notice. If you're going to be wrong about autistic people, expect us to tell you.
Moving on: stop fucking lying. You say you want to help Autistic people. But your actions indicate you could not give a whiff of a shit about Autistic people. When Autistic people say "This harms us" and you say "we're sorry you feel that way", you are saying "I do not give a single fuck what you think, because me me me me me!!!!!!". We tried being nice, much nicer than you deserved. Everyone who posted about why awareness is harmful? Banned. Twice. And I know you didn't read a single thing. Everyone who tried to talk to your followers (who are a malignant band of shitheads)? Banned. After hours of abuse.
There's more indication that you don't care about autistic people: your followers are malignantly ableist and abusive. You banned people for criticizing awareness. You did not ban, or even verbally say "hey not cool" to your Real People friends calling us "mindless idiots". To those who wrote inaccessible screeds telling us how we're the actual worst people in the world. To those telling us to shut up because the Real People are talking. If you cared about autistic people, you'd not sit there while we were abused. That's what you're telling people it's ok to do to your son. Great job. A+ parenting.
Yet more proof? "It's on our Vlog." Look, Dean, Amy, even if you weren't frankly really boring videographers? Vlog is not accessible to many many autistic people. We have language processing problems. That is, in fact, an extremely common feature of autism. If you were knowledgeable enough to be the saviors of autism you claim to want to be, if you gave even the tiniest inkling of a care about actually autistic people, you'd know this and act on it. If you don't know this, that's because you were too busy deleting things to engage with them. Several of us told you this. You should have known it already. Vlog is inaccessible. Moving the discussion over to a platform we can't use? Yep you're really sorry & you really care. That's totally the message that gives. Wait, no it isn't. It gives the impression that you're doing everything possible to avoid Autistic people in the name of getting all cuddled by allistic autism parents who won't criticize you. This is disgusting behavior.
Yet more proof? "It's on our Vlog." Look, Dean, Amy, even if you weren't frankly really boring videographers? Vlog is not accessible to many many autistic people. We have language processing problems. That is, in fact, an extremely common feature of autism. If you were knowledgeable enough to be the saviors of autism you claim to want to be, if you gave even the tiniest inkling of a care about actually autistic people, you'd know this and act on it. If you don't know this, that's because you were too busy deleting things to engage with them. Several of us told you this. You should have known it already. Vlog is inaccessible. Moving the discussion over to a platform we can't use? Yep you're really sorry & you really care. That's totally the message that gives. Wait, no it isn't. It gives the impression that you're doing everything possible to avoid Autistic people in the name of getting all cuddled by allistic autism parents who won't criticize you. This is disgusting behavior.
Let's go back to your pathetic nonpology. "I'm sorry if you were offended, let's move on" is levels of no. First, "if"? Nope. You know that we were not happy because we told you in explicit terms. There is no if. Second, "offended" is downplaying things & you know it. Offended makes it sound like a matter of opinion. The word you're looking for is harmed. Your campaign perpetuates harm. I know you could not give less of a shit about adult autistics. You claim to care about your son. You're promoting a world that sees him as less than. Great job! Here, let me appeal to your selfish parent-ness: You all claim to want your child to make it without you. You are promoting the idea that your son will never speak except through you. This is forced dependence. You're the one insisting on making yourself indispensable forever, by promoting your stereotypes. Is your desire for it to be all about you really that deep, so deep you'll sabotage your son's adulthood?
That's a ridiculous question isn't it? Except it isn't, because you're posting your child's very personal business all over the internet. I wish I could believe you're ignorant of the ramifications but I know you aren't because multiple people told you.
Harm. You mean harm. And you aren't sorry or you'd stop doing it instead of letting your followers be just as ableist and bigoted as you are & then vanishing the page.
And "let's move on"? You don't get to make that call. You're the one who fucked up. The people you harmed are the ones who get to decide when or if to move on. There is no moving on with people who are insisting on continuing to harm people (see, "you are showing no indication of actually being sorry", above, & yesterday). We can't move on. We're still on "can you pretend you think we're people?" (answer clearly being "nope, I don't want to!! I'm too busy nailing myself to the cross!") You're trying to say "let us continue hurting you but shut up about it this time".
And this was all predictable. You aren't the first people to do this. You are not clever. You are not unique snowflakes. People the first night you came to our attention said this was exactly what you'd do. They've seen the pattern before.
In my very first comment on the restored page, I said the same thing: that you'd prove me right, that you weren't sorry, remorseful, or willing to learn. Anyone who deletes as many trying to educate you links as you did & shuts down the page because of mild criticism is going to do the same thing you did: deflect, make it all our fault for thinking we're people, & double down on being self centered bigots. I wanted to be wrong.
I wasn't wrong.
Maybe I'd trust autism parents more to pretend to think about our interests if more of you managed to convince me you're listening. But you, Dean & Amy, didn't even pretend to listen. You pretended to care, but not convincingly.
We're the ones who will put your son back together. You had the opportunity to learn now, while he was little & you hadn't irrevocably fucked up. You choose, however, to continue being fuckups because it makes you feel good rather than actually listening to your son's peers. That is the choice you are knowingly, intentionally making. The choice to perpetuate a hostile world for your son.
Prove me wrong. Do better. Be better. Go and offer sincere apologies, all 5 components, to every autistic person you silenced (Twice!!) and then act on them. Be better.
Or you can continue down the path to proving me right. Your choice.
Friday, August 14, 2015
Who is your "awareness" really for?
If I never have to write about "awareness" again it'll be too soon. We've had Social Media Shutdown. We've had AutismSpeaks10. We've had AutismHeroes. We've had Smother Autism. And now we have Silent Selfie.
What do these have in common? They are allistic parent led initiatives that play on popular stereotypes to get pity in the name of "awareness". And they all, without fail, have responded negatively to Autistic people saying "that's not ok". It's like they all took the same class. Today I'm focusing on Silent Selfie because they're relatively new and because they're so emblematic of the problem, it's truly astonishing.
"Silent Selfie" is something a whiny autism mom (who calls her blog "A Year In the Life Of Autism", yet she is all about the person first language. There are so many things wrong with this it's a whole other post, let's just say: an allistic person can't write about that. Nope. That's co opting her child's point of view & pretending she speaks for him) started. For "Awareness", because apparently she's under that rock where no one has heard of autism. I don't know where this rock is, perhaps Narnia. It's where other allistic people take pictures of themselves with their hand over their mouth "for autism".
First thing wrong with this : hand over the mouth photos have been used extensively in raising awareness and support for survivors of human trafficking. I believe I've also seen them in sexual violence reduction campaigns. Do not do this. This is not your symbol. Stop. Stop. Stop. No.
Second thing wrong with this: we aren't silent. Self advocacy is for everyone. Literally everyone communicates. Their voices may not be out loud, but everyone has the capacity to express things. It may be with voice. Or sign. Or behavior. Or AAC. But everyone does this. So stop that.
Third thing wrong with this: parents & professionals & other allistic people go out of their way to silence us on a daily basis. We aren't silent because of autism; we are silent because of the sorts of people who build awareness campaigns. We're regularly trying to explain ourselves & being banned, bullied, threatened, deleted--silenced.
In fact, that's what the martyrs behind Silent Selfie chose to do: they chose to silence Autistic people protesting against their premise. And then they lied about it. A commenter on the threads predicted it, because she has pattern recognition. This is why I say that able people go to school for this: because the Autistic person said exactly what would happen, they presumably saw it, and they did it anyway.
When you are the dominant group silencing us, you don't get to use "this thing that I silence people for is the reason I am taking this offensive picture!" as a thing. That's not acceptable. I need a new irony meter. And no one is fooled; we know you're shushing us up because we're autistic & dare to disagree with you.
And we're back to who is this really for? It isn't helping your kid when you post about "silenced by autism"; it's really not helping your kid when you silence Autistic people. But it gets you warm fuzzes, right? And Oh What A Good Mom! points with other Real People. Nevermind that when you insist on speaking over us, you are perpetuating a world where your child is seen as needing you to speak for him forever (something you claim to not want! You want him to be able to do the thing! But not enough to build a world where people listen to him!). And that's ego. That's centering yourself.
Autism is not about you. We don't want your awareness. We don't want your damn silent selfies. If you really want to do something for autistic people, first stop posting your kid's business all over the internet. Then listen to us. Stop doing this mommy centered 'awareness' crap that stigmatizes us.
And stop lying about it. "We would never silence our friends with autism!" immediately after banning a dozen autistic activists? That's lying. Deleting all criticism and claiming people didn't understand it? Also lying.
We understand it. We may understand it better than you do. It's not okay. Your campaign is not okay. If you want a "pity me, for my child is not the child I wanted" awareness campaign, be honest and do that. Don't claim it's for us. It's not.
If you really want to do something for us, try actually being silent & listening for once.
What do these have in common? They are allistic parent led initiatives that play on popular stereotypes to get pity in the name of "awareness". And they all, without fail, have responded negatively to Autistic people saying "that's not ok". It's like they all took the same class. Today I'm focusing on Silent Selfie because they're relatively new and because they're so emblematic of the problem, it's truly astonishing.
"Silent Selfie" is something a whiny autism mom (who calls her blog "A Year In the Life Of Autism", yet she is all about the person first language. There are so many things wrong with this it's a whole other post, let's just say: an allistic person can't write about that. Nope. That's co opting her child's point of view & pretending she speaks for him) started. For "Awareness", because apparently she's under that rock where no one has heard of autism. I don't know where this rock is, perhaps Narnia. It's where other allistic people take pictures of themselves with their hand over their mouth "for autism".
First thing wrong with this : hand over the mouth photos have been used extensively in raising awareness and support for survivors of human trafficking. I believe I've also seen them in sexual violence reduction campaigns. Do not do this. This is not your symbol. Stop. Stop. Stop. No.
Second thing wrong with this: we aren't silent. Self advocacy is for everyone. Literally everyone communicates. Their voices may not be out loud, but everyone has the capacity to express things. It may be with voice. Or sign. Or behavior. Or AAC. But everyone does this. So stop that.
Third thing wrong with this: parents & professionals & other allistic people go out of their way to silence us on a daily basis. We aren't silent because of autism; we are silent because of the sorts of people who build awareness campaigns. We're regularly trying to explain ourselves & being banned, bullied, threatened, deleted--silenced.
In fact, that's what the martyrs behind Silent Selfie chose to do: they chose to silence Autistic people protesting against their premise. And then they lied about it. A commenter on the threads predicted it, because she has pattern recognition. This is why I say that able people go to school for this: because the Autistic person said exactly what would happen, they presumably saw it, and they did it anyway.
When you are the dominant group silencing us, you don't get to use "this thing that I silence people for is the reason I am taking this offensive picture!" as a thing. That's not acceptable. I need a new irony meter. And no one is fooled; we know you're shushing us up because we're autistic & dare to disagree with you.
And we're back to who is this really for? It isn't helping your kid when you post about "silenced by autism"; it's really not helping your kid when you silence Autistic people. But it gets you warm fuzzes, right? And Oh What A Good Mom! points with other Real People. Nevermind that when you insist on speaking over us, you are perpetuating a world where your child is seen as needing you to speak for him forever (something you claim to not want! You want him to be able to do the thing! But not enough to build a world where people listen to him!). And that's ego. That's centering yourself.
Autism is not about you. We don't want your awareness. We don't want your damn silent selfies. If you really want to do something for autistic people, first stop posting your kid's business all over the internet. Then listen to us. Stop doing this mommy centered 'awareness' crap that stigmatizes us.
And stop lying about it. "We would never silence our friends with autism!" immediately after banning a dozen autistic activists? That's lying. Deleting all criticism and claiming people didn't understand it? Also lying.
We understand it. We may understand it better than you do. It's not okay. Your campaign is not okay. If you want a "pity me, for my child is not the child I wanted" awareness campaign, be honest and do that. Don't claim it's for us. It's not.
If you really want to do something for us, try actually being silent & listening for once.
Saturday, August 8, 2015
Things I cannot do--because I'm epileptic
Language note: If you're here from the epilepsy part of the internet, welcome. If you are just here to tell me that "you HAVE epilepsy, epilepsy doesn't have you!" or any other person first thing--don't. I choose identity first language for a reason. In this case, because yes, epilepsy *does* have me a lot of the time. I have to do a lot of life rearranging because access is miserable. Person firsting me isn't going to change that. I'd argue that person firsting is contributing to the problem, because it creates this picture that I can just leave epilepsy at home. I can't. That's the point of this post.
A partial list of things I cannot do because I am epileptic:
-I cannot go to conferences about autism, even those put on by Autistic people. "Allies" are right out. There's one--ONE--I have been to where someone hasn't been setting off seizures knowingly. One. And I was the bad guy for daring to be epileptic (please note that 30% of autistic people will have epilepsy at some point in their life).
-I do not do anything in the populated part of the city on weekend nights. There are too many cyclists with flashing lights on the front of their bikes. These are a danger to me. So are cyclists themselves, as they're so caught up in their self righteousness they'd rather threaten to kill or rape or kill and rape me than change their fucking light. "I don't care" is the least aggressive response cyclists give to being made aware that their lights endanger people.
-I can't always walk to the grocery store. See: cyclists. They managed to get between me & the grocery store twice & between me & home another twice riding about my neighborhood on World Naked Bike Ride. WNBR knows they are unsafe (because I told them). They will take no steps to allow people to be safe from them (such as publishing the route. I'd be asking to be murdered in my bed if I asked them to--shock horror--not strobe. The ADA isn't for cyclists).
-I can't go dancing. Because the ADA doesn't apply to religious dancers who think epilepsy is demons, either. That is a hill they'd choose to die on.
-I've had to sue a school because they wouldn't teach a professor to turn off a fucking light.
-I don't go places where I don't know everyone without a seizure (and me) literate person around. There's too much risk of triggers, too little risk of them giving a shit without a Real Person telling them to.
-I can't rely on first responders, so they don't count as seizure literate. Most paramedics have no fucking idea that there's more than one kind of seizure. Having a partial complex seizure & having 911 called is a great way to end up either shot or dead in restraints.
-I can't go to concerts. Not just the ones you'd think have strobe lights. Any of them.
-I'm not going to the Bernie Sanders rally this weekend because having a partial complex seizure around someone running for office is a great way to get killed by their security, & there is no way any accessibility policy made allows for the existence of epileptics who vote.
-More and more 'attractions' are becoming inaccessible as people figure out how to make more shit strobe. Apparently Medieval Times has strobing swords. So much for authenticity.
-I don't go to movies without a non epileptic friend for similar reasons. Movies that should have warnings never do (looking at you, Mockingjay part 1. Also you were so close to getting it uncomfortable but safe & managed a hellscape. Heck of a job).
-Children are a danger. Because their parents, who are my age & grew up without strobing shoes or backpacks, apparently forgot that it is possible to have a childhood without these things. Try going anywhere without running into strobing kids.
-My sound triggers? Good luck avoiding them on the bus (because the drivers won't tell people to turn down their music, & everyone apparently wants to be judged by their music) or walking down the street (again, people want to be judged by their music & damn everyone else)
-I don't trust the Epilepsy Foundation with our ADA issues because they're so hung up on Perfectly Normal (EFA National? If you're reading this, I keep saying that because the person in charge of the Northwest chapter was all about the Perfectly Normal). If that's an organization's official stance I do not trust them with my access needs.
People. The Americans with Disabilities Act is not just ramps and braille. My access matters too. And people are so aware of autism that I could gag on their puzzle ribbons, so they assume that when I say I'm disabled, I mean that I'm disabled by my autism. And being Autistic does come with support needs. But being Autistic isn't the reason I choose to not do shit I want to do. There's things I have no desire to do because I'm Autistic & find them miserable.
But I don't have to choose to not socialize because of autism. I have to choose to not go all sorts of places because epilepsy. If you're here because you care about Autistic people, remember that 30% figure above. Do you care about all of us? If you're here because you care about Disabled people--well, epilepsy is way more social-model disabling for a lot of us than autism is. Before starting a new activity or sport I don't feel the need to warn people that I'm Autistic, though I don't pass. I feel the need to tell them I'm epileptic because that is what gets triggered. That is what people freak out about if they aren't told. That is the thing that's actually likely to be an issue in the activities I choose.
Where's my access rights?
Wednesday, July 15, 2015
No, I don't want biological kids. No, that doesn't make me a monster. Or a self loathing disabled person.
As I get older and yet don't age much, people have gotten more insistent about how I just must have kids. No, I really mustn't. If I do decide to raise kids, I will foster. I will be the sort of foster parent who teaches the youth in my care life skills like budgeting and how to fill out a job application and an apartment application and assembling cheap furniture. But I have exactly no desire (in fact, the opposite of desire) to have biological kids.
"But it's different when they're your own!" people shout at me. No, it isn't, because my issue isn't with kids in general. I like kids. I choose to work with children and youth. I mentor & I teach a scary sport. And if I do foster? Those kids are mine. Well, they're their own first & foremost, but a child I find through the system (which I know has a lot of problems. I know. Unethical and leaving kids out to dry when they're 18 & lots of yuck. That isn't where I intended to go with this)--that child would be every bit as much my baby as one I actually incubated. Given that I really can't do the whole pregnancy thing, more, because I wouldn't completely wreck my body in a completely predictable way. I get all protective and full of wonder with my athletes, & I see them like 10 hours a week. I am completely capable of developing the suite of feelings and attachment to a kid I didn't birth, if that is the road I choose to take. Really I am.
But right now it isn't.
"So you like kids! You've considered the steps to take to have a family via an alternate means! So you should have your own!." Woah woah woah hold the phone why are you so obsessed what I do with my uterus? Focus on your own damn uterus. I like kids. And I already have a family, they're called chosen family. Raising mini-mes is not necessary to have a family. And, since you asked, I really shouldn't have babies so it's a damn good thing I don't want to.
Oh you want to argue with me about how I could have a miracle? Nope. Time for some genetics: I have Classical Type Ehlers-Danlos Syndrome. It is a heritable connective tissue disorder, basically my collagen doesn't so much hold things in place as generally suggest they hang out in this general region. Currently I am doing extremely well for someone with classical EDS: I have minor pain, I do have recurrent subluxations but I can reduce every one by myself. The only eye problem I have is I'm moderately nearsighted, though my sclera are blue, but that's mostly just cool. I have a mild Chiari malformation where currently all the troublesome symptoms are treated without taking some bone off the back of my head. I have other cooties too but this is the one that's most immediate in the pregnancy you're so convinced I need to be fulfilled.
FOLLOWING PARAGRAPH GETS REALLY GROSS WITH THINGS THAT HAPPEN WITH RUBBER BODIES. BE WARNED. IT'S REALLY ICK ICK ICK
EDS is autosomal dominant. That means there is a 50% chance that the fetus would inherit the gene from me. Pregnancy in an EDS uterus haver is extremely risky, lots of chance of miscarriage, loads of worsening the laxity (because relaxin, the hormone that lets the everything open up, doesn't take a break just because the uterus haver is already made of rubber. It means new & exciting dislocations). An EDS haver with an EDS fetus? It's even worse. The placenta coming off early, lots of interesting prolapsing. Like, theoretically, every organ in the godsdamn pelvic cavity can prolapse all the way into & through the vagina. Isn't that just pleasant? "Sorry, we're going to whisk your extremely early baby off to NICU and try to put its shoulders and hips back in place...annnnd currently your uterus is on the outside with a large part of your intestines along for the ride. Major surgery. Now."
END TRULY DISGUSTING
And I haven't been able to even find much on what happens when 2 people with autosomal dominant connective tissue disorders have kids (because I do my research, because shooting people down is just easier than "I don't want kids I just don't I appreciate yours but I do not want my own" and resorting to "wow you want me to die in this revolting way" is actually the easier way to get them to back off). But my guess is that it's like the disgusting paragraph except more gross. I don't want that for me & I don't want that for any kid if it is foreseeable.
"You don't want your kid to have your thing. OMG closet ableist". Um. Hold the phone again and also this fruit basket. I do not want to have kids at all, I have a connective tissue disease that makes it really dangerous (even more so than adrenal insufficiency and epilepsy, which also do not stack well with pregnancy), and do not want kids because I don't want kids, is not the same as "I do not want a kid like me bc disability". If someone came to my door with an autistic epileptic kid and the income to support them, okay. I could do that. It isn't a disability thing, it's an assured mutual destruction thing. And a "no really I do not want to go through all that" thing. I have no issue with more kids with my disabilities existing. I have a problem with me making them.
Sorry to shit on your superior "childless uterus havers are bitter and evil and hate kids" bubble. I like kids. I do not want them. And before you get too high on that horse, remember that I'm not rare. There are lots of people who don't want kids but don't mind yours (until you get all sanctimommy. Sanctimommies who think that women without children are evil make their kids a lot harder to tolerate because it also requires tolerating their parents.) A lot of people can't have kids for medical reasons, or for financial reasons, or for undiscovered reasons, but the prying of folks who think everyone needs babies is painful. You're hurting them more than you're hurting me, because I just tell you about that gross paragraph, or tell you that you're harming your child's ability to relationship with a big swath of adults. But it doesn't cut me to the bone like it does someone with fertility difficulties.
I still don't want kids. Nothing you say can make me want kids. I like other people's kids. Yes, it's different when they're my own because either I was matched via an agency or they did terribly life altering things to my body that are not really on my list because they can be fatal. That isn't a good kind of different.
I'm 32 godsdamned years old & you can stop trying to change my mind at any time now, really.
"But it's different when they're your own!" people shout at me. No, it isn't, because my issue isn't with kids in general. I like kids. I choose to work with children and youth. I mentor & I teach a scary sport. And if I do foster? Those kids are mine. Well, they're their own first & foremost, but a child I find through the system (which I know has a lot of problems. I know. Unethical and leaving kids out to dry when they're 18 & lots of yuck. That isn't where I intended to go with this)--that child would be every bit as much my baby as one I actually incubated. Given that I really can't do the whole pregnancy thing, more, because I wouldn't completely wreck my body in a completely predictable way. I get all protective and full of wonder with my athletes, & I see them like 10 hours a week. I am completely capable of developing the suite of feelings and attachment to a kid I didn't birth, if that is the road I choose to take. Really I am.
But right now it isn't.
"So you like kids! You've considered the steps to take to have a family via an alternate means! So you should have your own!." Woah woah woah hold the phone why are you so obsessed what I do with my uterus? Focus on your own damn uterus. I like kids. And I already have a family, they're called chosen family. Raising mini-mes is not necessary to have a family. And, since you asked, I really shouldn't have babies so it's a damn good thing I don't want to.
Oh you want to argue with me about how I could have a miracle? Nope. Time for some genetics: I have Classical Type Ehlers-Danlos Syndrome. It is a heritable connective tissue disorder, basically my collagen doesn't so much hold things in place as generally suggest they hang out in this general region. Currently I am doing extremely well for someone with classical EDS: I have minor pain, I do have recurrent subluxations but I can reduce every one by myself. The only eye problem I have is I'm moderately nearsighted, though my sclera are blue, but that's mostly just cool. I have a mild Chiari malformation where currently all the troublesome symptoms are treated without taking some bone off the back of my head. I have other cooties too but this is the one that's most immediate in the pregnancy you're so convinced I need to be fulfilled.
FOLLOWING PARAGRAPH GETS REALLY GROSS WITH THINGS THAT HAPPEN WITH RUBBER BODIES. BE WARNED. IT'S REALLY ICK ICK ICK
EDS is autosomal dominant. That means there is a 50% chance that the fetus would inherit the gene from me. Pregnancy in an EDS uterus haver is extremely risky, lots of chance of miscarriage, loads of worsening the laxity (because relaxin, the hormone that lets the everything open up, doesn't take a break just because the uterus haver is already made of rubber. It means new & exciting dislocations). An EDS haver with an EDS fetus? It's even worse. The placenta coming off early, lots of interesting prolapsing. Like, theoretically, every organ in the godsdamn pelvic cavity can prolapse all the way into & through the vagina. Isn't that just pleasant? "Sorry, we're going to whisk your extremely early baby off to NICU and try to put its shoulders and hips back in place...annnnd currently your uterus is on the outside with a large part of your intestines along for the ride. Major surgery. Now."
END TRULY DISGUSTING
And I haven't been able to even find much on what happens when 2 people with autosomal dominant connective tissue disorders have kids (because I do my research, because shooting people down is just easier than "I don't want kids I just don't I appreciate yours but I do not want my own" and resorting to "wow you want me to die in this revolting way" is actually the easier way to get them to back off). But my guess is that it's like the disgusting paragraph except more gross. I don't want that for me & I don't want that for any kid if it is foreseeable.
"You don't want your kid to have your thing. OMG closet ableist". Um. Hold the phone again and also this fruit basket. I do not want to have kids at all, I have a connective tissue disease that makes it really dangerous (even more so than adrenal insufficiency and epilepsy, which also do not stack well with pregnancy), and do not want kids because I don't want kids, is not the same as "I do not want a kid like me bc disability". If someone came to my door with an autistic epileptic kid and the income to support them, okay. I could do that. It isn't a disability thing, it's an assured mutual destruction thing. And a "no really I do not want to go through all that" thing. I have no issue with more kids with my disabilities existing. I have a problem with me making them.
Sorry to shit on your superior "childless uterus havers are bitter and evil and hate kids" bubble. I like kids. I do not want them. And before you get too high on that horse, remember that I'm not rare. There are lots of people who don't want kids but don't mind yours (until you get all sanctimommy. Sanctimommies who think that women without children are evil make their kids a lot harder to tolerate because it also requires tolerating their parents.) A lot of people can't have kids for medical reasons, or for financial reasons, or for undiscovered reasons, but the prying of folks who think everyone needs babies is painful. You're hurting them more than you're hurting me, because I just tell you about that gross paragraph, or tell you that you're harming your child's ability to relationship with a big swath of adults. But it doesn't cut me to the bone like it does someone with fertility difficulties.
I still don't want kids. Nothing you say can make me want kids. I like other people's kids. Yes, it's different when they're my own because either I was matched via an agency or they did terribly life altering things to my body that are not really on my list because they can be fatal. That isn't a good kind of different.
I'm 32 godsdamned years old & you can stop trying to change my mind at any time now, really.
Sunday, July 12, 2015
My disability is ALL ABOUT YOU.
You figured it out.
I am epileptic, and have seizure triggers out in the wild, just to inconvenience you. It is something I decided to make happen with my sheer desire to piss you off. That's how it works. You are the center of the world, so much so that I altered my brain in a life threatening way in order to fuck up your day.
That's how it goes.
I choose to be unable to go to dance things, though I am a good dancer, because too many flash cameras & poorly balanced bass can kill me. Yes, dance people, you are oppressed by my seizure disorder, which developed solely to make your life harder. The ADA is also fascist oppression all on poor widdle you. Because disabled people exist to upset your life.
Cyclists: my photosensitivity is actually a conspiracy by Big Automobile to get you squished like a pancake. You're exactly right. That's why the rape & death threats are acceptable, I'm working with big business. So yeah you're totally in the right continuing to knowingly hurt me, because my brain was specifically engineered to make your life harder (gosh, empathy is tough isn't it?)
Autism conferences? All of you (there's one that hasn't had someone who was there to make money attack me with something potentially deadly. ONE)? Yes, I developed epilepsy, just like 30%+ of the autistic population, because I am a meaniepants who wants to make your life hard. I know my ADA rights to be difficult. To be confrontational and noncompliant. I am being a literal shit & thinking they actually apply to me because I want to make your life miserable--not because I have a right to live my damn life and to go to things that are about me. Nope. That funky EEG exists *just to inconvenience you*.
That's the whole reason. You folks are super important. And seizure activity makes me panicky because I'm just an asshole who wants to yell at you while you or people you hired are actively causing me harm. I totally haven't learned too much about SUDEP or status epilepticus (which I am consistently having to teach you people about. Like you ever listen. Ever. No, learning is the oppressor! How dare I try to instruct you!)
Quacks & altmed people who are into sound and light woo? Yes. I am so hell bent on debunking you that I have seizures over it. I know, I know, die off herxing negativity whatever. It's just to keep you from making money with your bullshit. Except the part where this is the place that so many so called skeptics will err on the side of shitting on disabled people ("stay in your house!" because once again empathy & the ADA are fascism) rather than debunking the low hanging fruit you're selling. But still, it's all about you too.
Yeah, usually-debunkers, I notice. I notice. It's all about you, too, though. Gosh, you have to pick between your favorite people to shit on! I make your life so hard. Harder because I know my rights & I call you shitty bigots when you're being shitty bigots.
And then when I defend my rights, I'm the bad guy. Because you are so important. Thinking about other people is hard. Epilepsy makes you uncomfortable. You have no problem getting on your high horse when someone whose consciousness is altered is attacked (because of the presence of an attacker thank you, no one ever 'asked for it'). Moralizing and shit. But you moralize at me when, yes when, something happens to me because I was seizing because of shit people you relate to were doing? And you feel very uncomfortable. So the obvious answer isn't for you to grow some damn empathy. It's to decide epilepsy exists just to inconvenience you.
So, fine, you're right. I am going to die an unpleasant death, triggered by some self righteous asshat (note that all these categories are full of self righteous asshats? They really are), because my brain engineered itself all for them. It's totally all about you. You're right.
For my brain to be about me I'd have to be a Real Person. How could I ever forget that I'm not, & therefore do not have the rights of one?
I am epileptic, and have seizure triggers out in the wild, just to inconvenience you. It is something I decided to make happen with my sheer desire to piss you off. That's how it works. You are the center of the world, so much so that I altered my brain in a life threatening way in order to fuck up your day.
That's how it goes.
I choose to be unable to go to dance things, though I am a good dancer, because too many flash cameras & poorly balanced bass can kill me. Yes, dance people, you are oppressed by my seizure disorder, which developed solely to make your life harder. The ADA is also fascist oppression all on poor widdle you. Because disabled people exist to upset your life.
Cyclists: my photosensitivity is actually a conspiracy by Big Automobile to get you squished like a pancake. You're exactly right. That's why the rape & death threats are acceptable, I'm working with big business. So yeah you're totally in the right continuing to knowingly hurt me, because my brain was specifically engineered to make your life harder (gosh, empathy is tough isn't it?)
Autism conferences? All of you (there's one that hasn't had someone who was there to make money attack me with something potentially deadly. ONE)? Yes, I developed epilepsy, just like 30%+ of the autistic population, because I am a meaniepants who wants to make your life hard. I know my ADA rights to be difficult. To be confrontational and noncompliant. I am being a literal shit & thinking they actually apply to me because I want to make your life miserable--not because I have a right to live my damn life and to go to things that are about me. Nope. That funky EEG exists *just to inconvenience you*.
That's the whole reason. You folks are super important. And seizure activity makes me panicky because I'm just an asshole who wants to yell at you while you or people you hired are actively causing me harm. I totally haven't learned too much about SUDEP or status epilepticus (which I am consistently having to teach you people about. Like you ever listen. Ever. No, learning is the oppressor! How dare I try to instruct you!)
Quacks & altmed people who are into sound and light woo? Yes. I am so hell bent on debunking you that I have seizures over it. I know, I know, die off herxing negativity whatever. It's just to keep you from making money with your bullshit. Except the part where this is the place that so many so called skeptics will err on the side of shitting on disabled people ("stay in your house!" because once again empathy & the ADA are fascism) rather than debunking the low hanging fruit you're selling. But still, it's all about you too.
Yeah, usually-debunkers, I notice. I notice. It's all about you, too, though. Gosh, you have to pick between your favorite people to shit on! I make your life so hard. Harder because I know my rights & I call you shitty bigots when you're being shitty bigots.
And then when I defend my rights, I'm the bad guy. Because you are so important. Thinking about other people is hard. Epilepsy makes you uncomfortable. You have no problem getting on your high horse when someone whose consciousness is altered is attacked (because of the presence of an attacker thank you, no one ever 'asked for it'). Moralizing and shit. But you moralize at me when, yes when, something happens to me because I was seizing because of shit people you relate to were doing? And you feel very uncomfortable. So the obvious answer isn't for you to grow some damn empathy. It's to decide epilepsy exists just to inconvenience you.
So, fine, you're right. I am going to die an unpleasant death, triggered by some self righteous asshat (note that all these categories are full of self righteous asshats? They really are), because my brain engineered itself all for them. It's totally all about you. You're right.
For my brain to be about me I'd have to be a Real Person. How could I ever forget that I'm not, & therefore do not have the rights of one?
Friday, May 1, 2015
BADD 2015: #blacklivesmatter, #freeolinka, & intersectionality reminders
For today I was going to write about the latest developments in taking on college & university "Disability Services" offices.
But this is more important.
This post is written during what is being tweeted as the Baltimore Uprising. A couple weeks ago a man named Freddie Gray was killed brutally while in police custody. Baltimore is literally on fire, people are--if we're being honest, and I always am--risking their lives protesting police brutality, and activists in cities across the nation are protesting in solidarity with Baltimore.
Because I am a tell one story at a time kind of person, the bulk of this post is going to be about an activist in Texas, Olinka Green, who is a disabled Woman of Color & a friend of a friend. Olinka was at a silent march in Dallas, wearing a sandwich board with names of people killed by police. She was told to leave by some of their 'law enforcement' officers, and she did. Then she attempted to get the badge number of the officers making her leave, something that is well within her rights to do (as is standing in a public place with a sign, but we know that). An officer ran her down with a Segway and maced her while yelling to "stop hitting me" (the officer). Olinka was holding onto a fence at this time, trying to not fall down, and not hitting anyone. She was taken to the hospital and is now being held at $30,000 bail (yes, 4 zeros. More than many people live on in a year) on charges of "felony assault".
Oh, did I mention that Olinka is disabled? I did! She has nerve damage that was certainly not improved by being run over with a Segway. She requires medication in order to not be in "cannot walk" pain. They are denying her said medication because of course they are.
There is crowd funding for Olinka's bail and legal fund here:
So here we have police brutality, racism, ableism, and likely a bit of misogyny as well all coming together. Denying people medication as punishment for going to a protest is not a new tactic. Just a month ago a man had multiple seizures while in police custody--after telling them he has epilepsy. He even had his meds with him (and was not charged with any crimes). Multiple people in our communities do not feel safe doing political activism because of this well known tactic.
First amendment rights apply to everyone, not just the healthy, wealthy, and white. The solution here is not compliance, it is not "well stay in your house then". It's systemic change. Black people, disabled people, and especially Black disabled people are at tremendous risk from folks who are supposed to "protect and serve" until that happens.
So. Seriously. If you can donate or share, that'd be rad. They're called rights for a reason.
Saturday, April 11, 2015
Childhood bully: a truth bomb
So this is the April that keeps on giving.
Regular readers will note that I don't write much about my childhood peers, except in vague terms or in passing when noting that I went to a school with tests to get in (because twice exceptional is twice screwed). Mostly though I'm extremely vague. I don't know why, I guess some of that "well, kids will be kids" internalized a bit, and part of me really wanted to swallow that blah blah awareness blah blah they'd feel terrible now blah blah excuses.
Welp. That ship done sailed.
Today a long time internet acquaintance was at the museum in my city with an art club. I met them there (they can identify themself if they so wish in the comments. But my issue isn't with them, it's with childhood bullies) for a very quick lunch before I went to do a work thing.
Turns out? The person in charge of my friend's thing was a childhood bully of mine who recognized me, because I haven't changed much since high school or maybe figuring out what "twelve years later" will look like is just normal. He asked my friend who I was. They told him. And I envision the conversation went approximately like this:
"who is your friend? Oh? NO WAY. We went to school together! No, no, she wouldn't remember me fondly at all. See, I was a big badass who joined with the other 24 kids in our class to make her life hell, because I am a big fucking coward. I'm still a big fucking coward, because I'm telling you, a student, instead of growing some kidneys instead of apologizing to someone I actually wronged.
"But, I mean, I wasn't the worst, so no one can hold that against me right? I only watched the rest of the class lock her in a locker. I was only silent when classmates cut her hair. I only whispered about the actually really fucking obvious signs that this kid was being abused at home, because they were funny. I only mocked her hand flapping when the teachers weren't watching. I'm a real stand up guy.
"I wanted to be a tough kid, so I proved it by shitting down on the biracial kid getting abused at both houses. Yeah I'm so punk. I am going to lie and tell you I stopped at age 10 when your friend, someone known as an actual badass in your movement, will tell you that actually it continued until she made friends with the scariest kid in our high school. No, we weren't in high school at 10, but I'm ashamed to have been such a shit so I am going to rewrite myself.
"Not ashamed enough, though, to actually apologize. Because like all bullies I'm a coward and because I'm a real person I expect you to sympathize with me, not the weirdo kid who was being raped at home and whose mom tried to bash in her skull and whose family configuration was weird as hell and who never had food at school and you would have too and that's my excuse.
"Oh, you say she's autistic? Well, no one told me that then and so everything I did doesn't count because it's not terrible if you are evil to someone because you think they're choosing to be weird. I'm not a sack of shit at all. Surely we're all over that now, kids will be kids."
So, here's the thing, shitty former classmate who should likely be very glad that I am face blind: you get exactly zero cookies.
You have enough self awareness to recognize that talking to me wouldn't have gone well. Great. You win a prize. The prize you earned of "not having all your art students know that you sexually, verbally, and emotionally harassed a classmate all through middle school" is what you get. Not a cookie. Avoiding the natural consequence of "this woman I traumatized all through school is using her singer lungs to announce all my sins". Good job. You also avoided a PTSD attack all over your general vicinity, but that doesn't mean I got to, because that's my prize for knowing your student: they told me who you were and that you halfass copped to being a miserable skid mark.
And I guess you did cop to being a fucking coward. You weren't the worst. Oh boy. Such moral fortitude. Except I remember you, now that you saw fit to drag me kicking & screaming into remembering you. You were just too much of a wimp to fully commit. You might get in trouble (ha. You may have legitimately passed the test to get into that school, and I know that mattered a lot to everyone back then, but you had zero pattern recognition. I had almost all the pattern recognition for the entire class of 1997--the person who got expelled in 8th grade didn't get expelled for any of the shit he did to me, including unwanted sexual touching and stealing. He got expelled for sexual harassment of people who mattered). You might get caught, as though anyone would care. You might cross the line & get kicked or hit back, and that might hurt (when we were 10 I was a whopping 52 pounds. I was always strong for size but at the time you're claiming you stopped, I wasn't big enough to hurt any of y'all. When you actually stopped you would have had more to worry about, except you fuckers were less with the touchy after 6th grade--during which I barely hit 70 pounds. So). Maybe you had a bit of a conscience, but child you was a fucking coward about that, too. I was standing up for other people shortly after I learned to speak at 5. I have no sympathy for child you.
I think part of you knows, dude, that child you is very lucky child me existed. You should be thanking whatever gods you do or don't believe in every night that child me was in your class, because you were a fucking weird kid yourself. Yeah, you could draw, but you weren't the only one. You weren't exactly, as I recall, in the financial bracket of the rest of the kids in our class either. You weren't all that athletic, or particularly funny, or quick to connect novel concepts, if we're being honest. And I am being so very honest. Based on where you lived (don't traumatize the autistic kid. She memorized everything as a way of staying safe from you, just FYI) you were not exactly close enough, geographically, to have longstanding buddy buddy clique situations with the other kids in our class. Oh, we're back to how you've always been a cowards, aren't we? You got to hang with them because you were mean to me. Nice, getting points with a bunch of other shitstains by, again, touching and stealing and making fun of the biracial poor kid getting abused at home.
Cute. Such tough. Many badass.
I hope you hate yourself. I really truly do. I know we went to Catholic school, but I don't believe for a second that forgiveness is for the forgiver. That it's a worthwhile thing to do when people aren't sorry. It's a nice idea for people whose lives are generally rosy, or perhaps for people who are cowards much like you who did bad things and don't want to own up to them because that's scary and hard. I think forgiveness is a gift. Sort of. No. Actually it's more like a qualification for certain jobs. You have to ask for it. You have to prove you mean it. You have to accept that you might not attain your goal. And not throw a big pissy fit when you aren't immediately forgiven. You have to then commit to not being such a waste of carbon and actually keep that commitment. I don't fuck around where forgiveness is concerned, and frankly I wish I believed in a hell so you & all our classmates could rot there. You can go be a coward with all the internet tough moms who send me death threats, you'll get on just famously.
I really don't understand, though, why you felt the need to mention this to your student at all? Did you think they could forgive you for me? It doesn't work that way? That they could assuage your guilt in some way using one of the common tropes? Your student is a lot younger than us & didn't grow up quite so much with "kids will be kids" and "well then don't be weird then". And they spend time in a community that I helped build that has a lot of anti bullying. Your student was not going to be impressed. Did you really think "so this cultural leader of yours, I contributed to her PTSD. But I wasn't the worst!" was really going to be a good way to build a good teacher/student relationship? I've taught a long time and "oh yeah I helped lock that person over there in a locker" is the opposite of things I would ever say to my students--not only because I've got a lot more moral fortitude than you do & would never do that, but because basic relationship building with students includes not giving them the impression you think people like them deserve to be tormented.
So. A+ teachering on that. Except not. Truly the people who set out to make a school for exceptional learners who synthesized and learn from experience are so proud of that error in judgement. I think you're too much a coward to be trying to scare them. How very adequate of you. You're certainly too much a fucking coward to own up to what a shitbasket you were as a kid, leading me to believe you sure are.
Congrats, though, for being the first person from that damnable school I've addressed on here. You can wear that with a badge of fucking honor. And then you can call up all your little buddies from that school and beg for cookies for the hours of PTSD flashbacks and days of nightmares you are bringing about. That would make you a fucking hero! Hot damn. You must be so proud.
Maybe you should stick around and read, if you're actually reading. And then not comment unless it's with a truly artful apology for being a waste of amino acids & a skid mark on the stain of humanity.
Regular readers will note that I don't write much about my childhood peers, except in vague terms or in passing when noting that I went to a school with tests to get in (because twice exceptional is twice screwed). Mostly though I'm extremely vague. I don't know why, I guess some of that "well, kids will be kids" internalized a bit, and part of me really wanted to swallow that blah blah awareness blah blah they'd feel terrible now blah blah excuses.
Welp. That ship done sailed.
Today a long time internet acquaintance was at the museum in my city with an art club. I met them there (they can identify themself if they so wish in the comments. But my issue isn't with them, it's with childhood bullies) for a very quick lunch before I went to do a work thing.
Turns out? The person in charge of my friend's thing was a childhood bully of mine who recognized me, because I haven't changed much since high school or maybe figuring out what "twelve years later" will look like is just normal. He asked my friend who I was. They told him. And I envision the conversation went approximately like this:
"who is your friend? Oh? NO WAY. We went to school together! No, no, she wouldn't remember me fondly at all. See, I was a big badass who joined with the other 24 kids in our class to make her life hell, because I am a big fucking coward. I'm still a big fucking coward, because I'm telling you, a student, instead of growing some kidneys instead of apologizing to someone I actually wronged.
"But, I mean, I wasn't the worst, so no one can hold that against me right? I only watched the rest of the class lock her in a locker. I was only silent when classmates cut her hair. I only whispered about the actually really fucking obvious signs that this kid was being abused at home, because they were funny. I only mocked her hand flapping when the teachers weren't watching. I'm a real stand up guy.
"I wanted to be a tough kid, so I proved it by shitting down on the biracial kid getting abused at both houses. Yeah I'm so punk. I am going to lie and tell you I stopped at age 10 when your friend, someone known as an actual badass in your movement, will tell you that actually it continued until she made friends with the scariest kid in our high school. No, we weren't in high school at 10, but I'm ashamed to have been such a shit so I am going to rewrite myself.
"Not ashamed enough, though, to actually apologize. Because like all bullies I'm a coward and because I'm a real person I expect you to sympathize with me, not the weirdo kid who was being raped at home and whose mom tried to bash in her skull and whose family configuration was weird as hell and who never had food at school and you would have too and that's my excuse.
"Oh, you say she's autistic? Well, no one told me that then and so everything I did doesn't count because it's not terrible if you are evil to someone because you think they're choosing to be weird. I'm not a sack of shit at all. Surely we're all over that now, kids will be kids."
So, here's the thing, shitty former classmate who should likely be very glad that I am face blind: you get exactly zero cookies.
You have enough self awareness to recognize that talking to me wouldn't have gone well. Great. You win a prize. The prize you earned of "not having all your art students know that you sexually, verbally, and emotionally harassed a classmate all through middle school" is what you get. Not a cookie. Avoiding the natural consequence of "this woman I traumatized all through school is using her singer lungs to announce all my sins". Good job. You also avoided a PTSD attack all over your general vicinity, but that doesn't mean I got to, because that's my prize for knowing your student: they told me who you were and that you halfass copped to being a miserable skid mark.
And I guess you did cop to being a fucking coward. You weren't the worst. Oh boy. Such moral fortitude. Except I remember you, now that you saw fit to drag me kicking & screaming into remembering you. You were just too much of a wimp to fully commit. You might get in trouble (ha. You may have legitimately passed the test to get into that school, and I know that mattered a lot to everyone back then, but you had zero pattern recognition. I had almost all the pattern recognition for the entire class of 1997--the person who got expelled in 8th grade didn't get expelled for any of the shit he did to me, including unwanted sexual touching and stealing. He got expelled for sexual harassment of people who mattered). You might get caught, as though anyone would care. You might cross the line & get kicked or hit back, and that might hurt (when we were 10 I was a whopping 52 pounds. I was always strong for size but at the time you're claiming you stopped, I wasn't big enough to hurt any of y'all. When you actually stopped you would have had more to worry about, except you fuckers were less with the touchy after 6th grade--during which I barely hit 70 pounds. So). Maybe you had a bit of a conscience, but child you was a fucking coward about that, too. I was standing up for other people shortly after I learned to speak at 5. I have no sympathy for child you.
I think part of you knows, dude, that child you is very lucky child me existed. You should be thanking whatever gods you do or don't believe in every night that child me was in your class, because you were a fucking weird kid yourself. Yeah, you could draw, but you weren't the only one. You weren't exactly, as I recall, in the financial bracket of the rest of the kids in our class either. You weren't all that athletic, or particularly funny, or quick to connect novel concepts, if we're being honest. And I am being so very honest. Based on where you lived (don't traumatize the autistic kid. She memorized everything as a way of staying safe from you, just FYI) you were not exactly close enough, geographically, to have longstanding buddy buddy clique situations with the other kids in our class. Oh, we're back to how you've always been a cowards, aren't we? You got to hang with them because you were mean to me. Nice, getting points with a bunch of other shitstains by, again, touching and stealing and making fun of the biracial poor kid getting abused at home.
Cute. Such tough. Many badass.
I hope you hate yourself. I really truly do. I know we went to Catholic school, but I don't believe for a second that forgiveness is for the forgiver. That it's a worthwhile thing to do when people aren't sorry. It's a nice idea for people whose lives are generally rosy, or perhaps for people who are cowards much like you who did bad things and don't want to own up to them because that's scary and hard. I think forgiveness is a gift. Sort of. No. Actually it's more like a qualification for certain jobs. You have to ask for it. You have to prove you mean it. You have to accept that you might not attain your goal. And not throw a big pissy fit when you aren't immediately forgiven. You have to then commit to not being such a waste of carbon and actually keep that commitment. I don't fuck around where forgiveness is concerned, and frankly I wish I believed in a hell so you & all our classmates could rot there. You can go be a coward with all the internet tough moms who send me death threats, you'll get on just famously.
I really don't understand, though, why you felt the need to mention this to your student at all? Did you think they could forgive you for me? It doesn't work that way? That they could assuage your guilt in some way using one of the common tropes? Your student is a lot younger than us & didn't grow up quite so much with "kids will be kids" and "well then don't be weird then". And they spend time in a community that I helped build that has a lot of anti bullying. Your student was not going to be impressed. Did you really think "so this cultural leader of yours, I contributed to her PTSD. But I wasn't the worst!" was really going to be a good way to build a good teacher/student relationship? I've taught a long time and "oh yeah I helped lock that person over there in a locker" is the opposite of things I would ever say to my students--not only because I've got a lot more moral fortitude than you do & would never do that, but because basic relationship building with students includes not giving them the impression you think people like them deserve to be tormented.
So. A+ teachering on that. Except not. Truly the people who set out to make a school for exceptional learners who synthesized and learn from experience are so proud of that error in judgement. I think you're too much a coward to be trying to scare them. How very adequate of you. You're certainly too much a fucking coward to own up to what a shitbasket you were as a kid, leading me to believe you sure are.
Congrats, though, for being the first person from that damnable school I've addressed on here. You can wear that with a badge of fucking honor. And then you can call up all your little buddies from that school and beg for cookies for the hours of PTSD flashbacks and days of nightmares you are bringing about. That would make you a fucking hero! Hot damn. You must be so proud.
Maybe you should stick around and read, if you're actually reading. And then not comment unless it's with a truly artful apology for being a waste of amino acids & a skid mark on the stain of humanity.
Pic vaguely related: Purkinje, the flame point Siamese seizure alert cat, has this face to make at such nonsense.
Saturday, February 28, 2015
So Autism Daily Newscast told a falsehood. And doubled down.
In the screenshot, a lie is highlighted. The lie that neurodiversity proponents don't consider autism a disability.
We do. We just don't think that means we need fixed:
Highlighted is their lie, which says " Basically, the position of groups like the Autism Self-Advocacy Network (ASAN) states that autism is not a disability, but rather, a different way of being, and that it is not something that needs to be “cured.”"
That is not the position of ASAN or any neurodiversity activists I know.
So I tweeted them. Twice. And am not the only person who tweeted them. They claimed to not know what I was talking about & requested an email.
So I sent this email:
So, we have denial the first. Followed by her feels parade:
Here's the thing:
When you lie, you don't get to be offended about being called out. When you misrepresent a community, you don't get to be offended about being called out. You get to try to fix it. That is your one decent option.
This is what I said back:
I quoted for them, as requested. Then I get their other person being all condescending and a jerk and derailing in my inbox, because why not ignore the point? We can't actually address the point, that'd be silly:
Thing is: it isn't defamation when you say someone is lying when they're actually lying.
It is a lie to say that ASAN's position is that autism isn't a disability.
ASAN is anti cure. That does not mean "autism is not a disability". Those are not synonymous.
And don't even with the condescension. Just don't. All that indicates to me is "don't even bother, just put it on the blog".
Because I actually have more faith in people than they deserve (or that I'll admit to) I sent one more email before starting this blog post. Maybe they just aren't understanding the words that I am saying!
And they sent me back more condescension, because why not?
This person seems to think the "autism community" and the "autistic community" are the same thing, rather than vaguely overlapping sets.
She also seems to think that ASAN is "autism self advocacy network". ASAN uses the identity first Autistic pretty much always.
And I agree, having this conversation is a waste of time. It has nothing to do with neutrality, it has to do with actual misrepresentations that turned into deliberate lies with the refusal to correct them.
So. Here's that pile of correspondence.
We do. We just don't think that means we need fixed:
Highlighted is their lie, which says " Basically, the position of groups like the Autism Self-Advocacy Network (ASAN) states that autism is not a disability, but rather, a different way of being, and that it is not something that needs to be “cured.”"
That is not the position of ASAN or any neurodiversity activists I know.
So I tweeted them. Twice. And am not the only person who tweeted them. They claimed to not know what I was talking about & requested an email.
So I sent this email:
And I got this back, an email that wasn't supposed to go to me but instead to the emailer's higher up:Ok so this is upsetting.You lied when you said that neurodiversity activists say we aren't disabled. That is a position that has been SOUNDLY rejected, refuted, and is just flat out nope.People who *do* say we believe that, exist. However, they are lying. And they are not neurodiversity activists.It is unprofessional to talk about people without talking to them. Talking to autism parents, particularly the sort who are committing behaviors we protest, is not the same as talking to autistic people (did you not learn that? is talking to me the same as talking to my father? Cuz it's not. Similar experience, in our case, but not the same). Is talking to parents who adopted internationally the same as talking to a transracial adoptee? (no. it is not.) So why do you do it when you talk about us?That is at best unprofessional and at most likely, disingenuous. This is seriously 3rd grade stuff.Some simple rules:1. Talking to parents isn't the same as talking to autistic people, unless they're autistic parents.2. Trying to get information about what neurodiversity proponents mean by talking to people who reject the neurodiversity paradigm is...there isn't a word for how wrong it is. It's like asking the KKK about racial justice, ok??3. When you choose to do these things anyway, you intentionally spread lies.4. There's no excuse, as twitter is overflowing with neurodiversity people.When will you publish & promote your correction of this willfully ignorant statement that spreads lies & makes it even harder for people like me to get services? Since apparently thinking you're ok, disability & all, means you don;t need help, bc of lies like yours and those of your sources?Seriously. You owe us a correction & a big honking huge apology. Prove my low expectations for you wrong by actually delivering.Kassiane
Shan -please deal with this - I am not even reading it tonight. I do not believe we said any such thing but maybe I missed it. Perhaps she could quote the place we said it?
R
So, we have denial the first. Followed by her feels parade:
Kassiane,
I am so upset that I replied to you rather than Shan Ellis my editor. I am deeply offended by your comments.
Roberta HillEditor-in-ChiefAutism Daily Newscast
Here's the thing:
When you lie, you don't get to be offended about being called out. When you misrepresent a community, you don't get to be offended about being called out. You get to try to fix it. That is your one decent option.
This is what I said back:
You don't really have a right to be offended here, given that *you* lied about *my* community.you said " Basically, the position of groups like the Autism Self-Advocacy Network (ASAN) states that autism is not a disability, but rather, a different way of being, and that it is not something that needs to be “cured.”"And that is a LIE.If you don't like being called out on lying, don't do it.You have no right, though, to pull the "so offended" card. You're the one who said to email you what I meant. I did. You're the one who ok'd a lie. This isn't about your feelings, this is about you misrepresenting the facts.
I quoted for them, as requested. Then I get their other person being all condescending and a jerk and derailing in my inbox, because why not ignore the point? We can't actually address the point, that'd be silly:
Dear KassianeThank you so much for your email. Unfortunately at this time we have no error to correct.I am on the Spectrum myself, and work as a journalist and editor. Our role on Autism Daily Newscast is to report the news without bias, and collect information to present as part of articles for the general reading public.To say that we are lying is indeed a defamatory statement, to repeat this defamation on twitter, or any other social networking site, is in fact under Section 10 of the defamation act a civil actionable offence. I would rather not have to go the extreme of a court case. I hope you feel the same, but we will defend the honour of our articles and writers to the last.We do take a broader view and interview people often and in the case of this article we talked to a collection of neurodiversity activists.We are not here to judge what other people believe, we simply report news.I would like to take a moment and remind you that some autistic people require advocates. The responsibility of advocacy for a child who is non verbal and (I despise this term) low functioning, falls to the next of kin or guardian who is usually the parent. I agree with you to some extent that if the individual can communicate there is no better way of understanding than to talk to the individual, not a third party. Unfortunately for some there is no other means to communicate.I find your comparison with the KKK wholly unacceptable and in incredibly bad taste. We have presented for and against arguments from both sides of the fence and do not feel the need to justify why we have taken this stance as we are completely neutral."We intentionally spread lies". No my dear, we report news. Again we are completely neutral and present both sides of the story to an audience who enjoy reading us.I completely understand your passion, if you would like to present an intelligently thought through article of your own representing your opinion I'd be happy to review it. I also understand your passion regarding the topic. But there are no mistakes, or errors or palpable "lies" in this article.I sincerely wish you all the luck in the world,Shan Ellis
Thing is: it isn't defamation when you say someone is lying when they're actually lying.
It is a lie to say that ASAN's position is that autism isn't a disability.
ASAN is anti cure. That does not mean "autism is not a disability". Those are not synonymous.
And don't even with the condescension. Just don't. All that indicates to me is "don't even bother, just put it on the blog".
Because I actually have more faith in people than they deserve (or that I'll admit to) I sent one more email before starting this blog post. Maybe they just aren't understanding the words that I am saying!
No, you lied.
When you said neurodiversity proponenets say autism is not a disability, you are LYING.
That is inaccurate. Had you fixed it, it would have been an error. As you are doubling down, it's a lie. People fix errors. People double down on lies & try to justify them (do not lecture me on people with differing support needs. That is not relevant. That has nothing whatsoever to do with you spreading falsehoods about what neurodiveristy proponents believe. Many neurodiversity proponents *are* nonspeaking for pete's sake).I see my low expectations are well founded.
And they sent me back more condescension, because why not?
Kassiane,I see there is very little point in continuing this conversation as you fail to see we are a neutral organisation operating to bring news to the autism community (which I am wholly ensconced in being diagnosed with Aspergers).We truly wish you the best, but at this time this article stands true to the way the reporter has composed it.Glad to be of service at this time
This person seems to think the "autism community" and the "autistic community" are the same thing, rather than vaguely overlapping sets.
She also seems to think that ASAN is "autism self advocacy network". ASAN uses the identity first Autistic pretty much always.
And I agree, having this conversation is a waste of time. It has nothing to do with neutrality, it has to do with actual misrepresentations that turned into deliberate lies with the refusal to correct them.
So. Here's that pile of correspondence.
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