What i faxed to House Committee Hearing on Autism

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Yesterday, I sat in front of my computer for several hours watching you have a discussion about people like me. For hours and hours I watched you talk about people like me as though we cannot hear you calling us an emergency, a crisis, a burden, a tsunami, hopeless, an unfortunate situation, poisoned, damaged. Always the horrific language. Always about children. Always children you claim to love.

All this talk of vaccines, of blame, of hate. I found myself asking again and again, why do you hate us so much? And why are we so invisible, that you can't even get past hating your kids enough to see that they hear you and that they grow up and that their adult counterparts are listening right now?

And then I heard Eleanor Holmes Norton speak up.

She asked about adults. She asked what happens to us if we are not in the system, if we are late diagnosed. She asked about people like me-autistic adults. People who the rest of the hearing seemed content to ignore the existence of.

And no one had an answer for Congresswoman Norton. But I do.

Congresswoman, I was diagnosed as a small child, but since I learned how to talk as a not much larger child your colleague Burton probably thinks I don't count. Since I could make it academically, and the goal of early intervention programs in those days (and many these days) is “mainstream kindergarten”, there are a whole lot of issues that were written off as behavioral, as choice, rather than as neurological.

Things like sensory issues.

Things like sequencing problems.

Things like inconsistent ability to functionally use language.

Things like not having a single friend in my grade.

Things like inability to remember and carry out auditory directions.

Things like an inability to get through a day in regular ed without melting down because I was so overwhelmed. Not when I was 5. Not when I was 8. When I was 15.

I am intelligent, I am academically capable, but there are things that I just. Can. Not. Do. And no telling me to try harder or just act normal or whatever was going to do it.

Congresswoman Norton, someone told you that our families thought we were quirky and took care of us. That person was incorrect. So incorrect.

By very early adulthood, my mother's war on autism (only since I can talk, I was “cured”, it was a war on weirdness, misbehavior, disrespect, what she perceived as willful faux cluelessness and laziness) had escalated to frank abuse, & she kicked me out of the house.

It was January. I was a statistic-a homeless autistic person. One of far, far too many.

I had read on the internet that services are a thing, that housing for people with disabilities is a thing, so I went to the local Arc to apply for services or at least get help applying for services. Do you know what they told me?

They told me that they had to talk to my parents. I was a legal adult, have never been under guardianship, and they would not talk to me, but only my parents. The parents who threw me out of their house after abusing me for years. THOSE parents. Those were the only people the Arc would interface with. They had no protocol whatsoever for working with adults with developmental disabilities who are independent but need a little help. Their one suggested resource, the local center for independent living, would not touch me with a 10 foot pole since I have developmental, not physical, disabilities.

The social safety net for all people is barely more navigable. It's more navigable in that it didn't require my mother. It's less navigable in that it required sitting in sensory hell for 4 hours waiting for them to call my number, every piece of documentation of income (or lack thereof) known to man, and it required making phone calls that never got returned on their schedule.

I would have starved to death waiting for foodstamps had another autistic person who has better phone skills than me-which is not difficult, incidentally-not called the worker who was supposed to call me back several times when they were not returning my calls.

And, Congresswoman Norton, I was one of the lucky ones. When I got kicked out, I got into a nice shelter, if such a thing can be said to exist. I was safer there than I was in my parents' home. I had someone who would call social service workers for me. I had a doctor who would fill out paperwork to keep me on necessary medication even though it is a pain in the ass. I had a social support structure that a lot of my Autistic peers just don't HAVE. The parent-centric service model was detrimental to my life, but it ends the lives of others.

This should not be the good outcome story here.

I'll tell you what happens to adult autistics, Congresswoman Norton: we don't fall into the cracks. We are shoved into the cracks. Those who deny our existence, like your colleagues, are doing nothing but shoving harder.

How my language happens. (or: I'm not as articulate as you think)

One of the ways people try to tell me I don't count is to tell me I am so articulate.

But the thing is, I am not. Not under most circumstances.

To make really good, clear language happen, I have to be responding to a stimulus. Most of my blog posts? There is something strong I am reacting to. I have to react to it. The words are there. I have to get them out. I cannot rest until I get them out.

And once they're gone, they're gone. They will never be as good as they were the first time, because the urgent burning need to make myself heard & understood, to express those words? The words don't get that they weren't heard. The words happened. They're gone.

Without something to react to, I'm actually not all that good at words. Give me something to feel passionate about, something that needs to be responded to, & enough things are firing that what comes out is good, maybe even beautiful. But without all that? Not so much. I'm not going to give you a full rundown of the things that are weird with how I word here, because no, but I assure you, my day to day nonprovoked language use is not anything like how I write.

I'm only articulate when the words are desperate to be heard & be free. Then & only then.

Orycon are liars

...or else they're so incompetent they can't find their asses with 2 hands & a map.

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For those of you playing along at home, Orycon told Dora that they would be cancelling the no Autistics involved autism panel.

What happened instead? According to someone who was actually there, the following events:

-The door of the panel still references autism. The people who elected to go against con staff instructions (if I am being charitable) or who were asked by con staff to ignore the cancellation (if I am not) are Joyce Ward-Reynolds, her son (who she offered up as a token), and G David Nordley.

-A friend of mine walks in wearing a neurodiversity shirt. Joyce-Ward Reynolds starts squirming & looking very uncomfortable and apologizes for using person first language. A note here: this is kind of like totalling someone's car & apologizing for scratching the paint.

-When asked why the panel was cancelled, Ms. Ward-Reynolds said it was “because there were some in the autistic community who were concerned about the panel not having any autistic people on it and when I offered to bring my son they said that wasn't good enough.”

-When my friend's NT friend went to registration to complain that the schedule still said “Autism Spectrum”, registration said it was a mistake. Not “Oh, they shouldn't be there”, but “it's a mistake, now I'mma go back to picking my fingernails”.

-Halfway through the hour, some guy (friend did not see who) opened the door, looked in, and said “Oh right, this room does not exist.” Ms. Ward-Reynolds laughed and said “Yeah, this panel never happened.”

-Therefore, official bullshit is that the panel was cancelled & this woman was using a vacant room to have an informal discussion, becoming the first person in the history of ever to use space rented by a con to do something she was explicitly told not to do by the con without the con noticing.

Now, I have been involved with organizing con like things before. And I am telling you one thing, nothing happens that con staff doesn't know about. And I am telling you another thing: if there is something that got cancelled because of controversy, con staff is especially watching the participants in that-if they care, of course.

If your goal is to do whatever you were going to do anyway, you happen to not notice that someone is in the space you paid for, doing what you said you wouldn't do. If your goal is to actually respect the people who raised the issue, you make DAMN sure that the cancelled event stays cancelled.

The dishonesty shown from Orycon is really disgusting. We made overtures, we made efforts, and contrary to what people who are used to having their asses kissed believe, we were all polite. Every one of us. Orycon didn't dislike our “tone”-there was nothing there to object to. They disliked being called on their oppressive bullshit.

Orycon told Dora that they learned, that they appreciated being told where they went wrong, that they wanted to make it right. Taking advantage of people wanting to work with you is not making it right. It will get back to us. We see your bullshit and raise you a “you did bad things and should feel bad”, Orycon. It is bad enough to go right ahead and do exactly what you are going to do anyway, but to lie about it? No. That multiplies the offensiveness exponentially-it WILL get back to us, and we WILL be pissed off.

Orycon staff & panelists have been disrespectful, dismissive, & dowright ableist from beginning to end. It's good to know that a couple of neurotypicals feel that their wish to share what they learned on Teh Googles is more important than what actually autistic people think about it, and it's fantastic to know that Orycon gives no shits.

The people who had the power to stop this did not.

So, let's recap the steps Orycon took in fucking up spectacularly (sorry, I'm sorry moderating my language and tone for y'all, it clearly does nothing good):

First, they scheduled this panel in the first place, clearly with little to no research on the subject in the first place.

Secondly, they condesplained at me when I inquired, and indicated that it was totes cool because you don't have to be gay to be for gay rights (they had no answer as to whether or not a panel of straight people talking about the apparent increase in homosexuality would be even a little acceptable-spoiler alert, y'all, it'd be fucking terrible don't do that).

Thirdly, when they met with another Autistic activist they told her they were completely ignorant & would be putting up an apology & cancelling the panel. That's not actually the bad part. The bad part is that they, here, were lying.

Fourthly, the apology they put up is a sack of crap. It is not an apology. They were told that the first thing they needed to do in their apology was acknowledge that they fucked up. If they have done this, I have yet to see it, but it sure as shit isn't in their nonpology-which is nothing but excusing themselves & pleading ignorance as though that's a get out of jail free card.

Fifthly, they still held the panel. If people are joking about the room not existing, it is damn well staff sanctioned, even if not officially. When Orycon allowed it to happen-and they knew, not only that, but my friend's NT friend's inquiry should have been a pretty big hint to check on it if they were serious about cancelling it-they spat in all of our faces. This is basic stuff here, guys.

If Orycon is serious about wanting to work with autistics, they're going to need to do a hell of a lot better than this. Apparently the chair is telling other people they're oh so sorry, that they feel like a failure of a human being, that they didn't know, that they didn't mean for this to happen, but I don't believe them.

If they were actually sorry but ignorant, they'd be doing some serious naming & shaming, because this isn't acceptable behavior, no matter how oh-so-important the NT panelists fancy themselves. IF they were actually sorry but ignorant, there should be a much longer, much better apology up on the website. If they are actually sorry at all, they owe an awful lot of people personal apologies in addition to owing the Autistic community some pretty significant groveling.

Joyce Ward-Reynolds, I don't know what makes you think you are above honoring promises made by a con that is paying you, but nothing does. You directly contributed to a world that devalues your son-not for being a furry, but for being autistic. Good job. Are you proud of yourself? I know, all that googling and maybe even reading a book was oh so hard, and you are oh so important, you couldn't possibly listen to someone who wasn't you, because you are an expert.

And no, throwing your son on the panel wasn't good enough, because this isn't his thing. He's a member of the furry fandom, good for him. He is not an autistic activist. This is not an area that he wants to talk about. Offering him up as a token was disrespectful to every autistic person who actually had things to say on the subject-and many of us have well researched opinions on the subject, by which I mean “we read scientific papers and we made comments on the DSMV criteria”. It was disrespectful to him as well. You may have him convinced that I'm a meaniepants, but at least I have enough respect for him to know that using him as a get-out-of-trouble shield is disgusting & dehumanizing. So I'll take being a meaniepants every time.

G David Nordley, what makes YOU so damn important that you don't have to honor the people you are talking about or the convention's promise? Seriously, I want to know.

This is the panel that is oh so autism sophisticated (their words) that they don't see it necessary to talk to autistic people. These are the folks who are so hell-bent on having their say they will put their reputation and that of Orycon on the line, damn what the people they're talking about have to say about it. That's how important they are (and people say autistics are self centered!). I'm reminded of a line from one of the parents in the ableist emails-something about how their son would be a shitty panelist unless you wanted to hear him talk about what he wants to talk about. Who went and did exactly that-talked about whatever they wanted to talk about without regards for other people? Oh it was these non autistic panelist. 'Scuse me, my irony meter exploded.

I'm waiting to see how you'll unfuck this up, Orycon. I know that this year's chair is telling other people that they feel like a failure of a human being, but is failing spectacularly to act towards being less of a failure-generally stopping failing is a good way to get past that feeling. I also know they're saying that nothing could be worse than what's going around on Tumblr (challenge accepted, btw). Things do get back to me.

Orycon has a lot of fixing to do before I will consider giving them my money, I will not be attending any cons where either Ms Ward-Reynolds or Mr Nordley are speaking, and I have a pretty steady crew of friends who are right on board this plan with me.

If it was your plan to deceive us all along, it is high time you put on your big kid undies and admitted it. If it really was panelists casting Forget on you & going rogue, convince me.

Orycon's "apology" sucks.

A fauxpology!

This is not an apology. This is trying to get out of trouble with no actual acknowledgement that you fucked up. There was no acknowledgement, publicly or privately, of the egregiousness of their behavior (documented here & on my tumblr).

It isn't our fault you didn't do your research, Orycon. We shouldn't have had to find you & explain "our voice" that you were so intent on excluding.

You are not the wounded parties here, & this isn't even a real apology. You rewrote the manual on fucking up. That means you should rewrite the manual on apology--and you didn't. It's yet another not really apology.



I remain unconvinced and unimpressed.