Some things shift. Some don't.

This is coming from my personal experience writing for TPGA's dialogue series. This is extraordinarily, probably obnoxiously, me-centering rather than autistic community centering. It's not taking posts about the dialogues on other blogs into account even a little. Those other reflections may come later. They may not.

The post I wrote for TPGA is easily the most emotionally taxing thing I have ever written. There are a lot of uncomfortable associations with what I wrote about, and with the stories I decided to not tell yet as well.

I wrote that post with the full expectation that I'd be yelled at, accused of being unempathetic, have my words or meaning misinterpreted and misrepresented, told that I was "lucky" for whyever (because I could get into a Y? I don't know). That's my default assumption when I write, especially when I write for a mostly allistic audience, and even more especially when I am sharing uncomfortable truths. That's frequently what happens-I get yelled at a lot.

Mostly, my self-protective cynicism wasn't necessary, at least not in regards to my post and reactions to it. This is kind of overwhelming really-I'm not totally sure how to handle people being so nice to me. Don't stop or anything; it's a wonderful kind of unsettling to have people say they've got my back. I just don't really know how to deal with it.

A number of lovely people are encouraging a bit of a shift in my cynicism & knee-jerk wariness of autism community people who aren't autistic community people. It's a small shift for now, but what has to be a few hundred people didn't yell at me. I wrote something uncomfortable and difficult and no one yelled at me. This shouldn't be a big thing, but it is. A touch of the tarnish on humanity's reputation with me was wiped away, just a little.

But don't think for a second this means that I am going to change what I write about or how I write it. I know that I say a lot of difficult, uncomfortable things. I know the frustration from being an autistic in an allistic land and the frustration from living some truly hellish times shows. It's still going to. People are going to find things uncomfortable, but you know what?

It needs saying. Discomfort leads to growth. And barring specific triggers (which I do try to put warnings for), you can probably handle it. Many autistic people have dealt with similar things and said similar things to what I have experienced and what I have said. They know it is the way of things, for better or (usually) worse. Allistic people? You need to-yes, need to-know not just the "heartwarming" or "inspiring" or the nonthreateningly insightful or the sanitized autibiography stuff. You need to know the awful, uncomfortable things too. Those things need to be acknowledged to be abolished.

You acknowledged the ugly side of my truths, allistic allies and potential allies. You acknowledged that they're both ugly and truth. I make you uncomfortable not to be mean, but to create a more beautiful truth in the future.

On The Dialogues & The Accompanying TwitterGate

I know, the disclaimer is getting old. Oh, also, please read to the end. I'm really trying to explain where I am coming from & provide ample context, not to attack anyone.

If you don't know what the title is referencing, The Thinking Person's Guide to Autism hosted/is still hosting at the time of this posting a series that will hopefully turn into a dialogue between autistic people & parent advocates (and plans are, autistic parent advocates).

And there was this Twitter conversation between Emily, who is an editor of TPGA, and Robert Rummel-Hudson, who was the allistic parent involved.

And then the internet exploded, because how it reads is "do not listen to autistic people, you do not have to."

What Emily was actually saying, in her own words, is posted here on her personal blog.

That doesn't mean, though, that it didn't read to a whole lot of us as "you do not have to listen to those autistic people". That does not mean it wasn't taken as "you do not have to listen to those autistic people" by someone or many someones.

See, that's the default most people take: not listening to autistic people. That's kind of what started this whole thing, isn't it? Not considering disabled people in disability matters? The whole false dichotomy of either parents or disabled people have voices that count?

When you are autistic or otherwise disabled, you know every day that people aren't listening to you, and certainly aren't trying to understand you. They are often coming up with reasons to not have to listen to you. We've been over all this before-silencing tactics, Not Like My Child, Argument from Tone, Parenting Is Hard, etc. It's significant. There aren't enough squares in a Bingo card, and it stops being funny when you get a blackout on 3 different cards in under 5 minutes anyway.

And I expect variants on "I don't have to listen to you! You can tie your shoes/you're a girl/you're a Scorpio/whatever" from a whole lot of people. It's a pattern.

But I don't expect anything that looks like that from people who I respect, people who I considered to be, you know, kind of on my side? And I respect Emily immensely. This post wouldn't be happening if I didn't respect Emily immensely. Based on her blog she has done a lot for her sons that I wish my parents had been willing and able to do for me. None of this is intended as attacky towards Emily.

Reading the Twitter feed, we have no context for what is going through the minds of the people tweeting. Read alongside the thought process post, the conversation makes a lot of sense and isn't particularly offensive. Other people are talking about neutrality issues, but I really don't give a poo about that-I like to assume if an autistic poster was similarly hesitant, someone from TPGA would be supportive of them, too, so that's reasonable to my eyes.

But what we see without that background information? It's kind of like that game kids do? "Open your mouth, close your eyes, in will come a big surprise!" and you're expecting something delicious because it's someone you trust, only instead of something delicious they give you a vinegar soaked cotton ball. That other kid over there may always stick vinegar soaked cotton balls in people's mouths, but this person usually sticks to fine chocolate! What just happened?!

I suspect if it wasn't everywhere that autistic people are to be neither seen nor heard nor understood, no one would have even noticed. I think that's where I was going with this. Unfortunately the dynamics of advocacy being what they are, & the inability to infuse relevant information to interpretation, probably made this whole Twitter thing bigger and more awful than it ever needed to be.

"Dialogue", Disillusionment, Disheartening

The syntax of this post brought to you by Vicodin/Flexeril/the pain that those are supposed to be covering but aren't. If I don't make sense, I'll fix it later. Or not. But this matters too much to just wait until I feel better & have a good communication day.

As I said on twitter, I am frustrated by the exchange on Thinking Person's Guide To Autism. The idea of this exchange, for anyone unfamiliar, was that 2 autistic advocates-Ari Ne'eman and Zoe (who's surname I am not comfortable publishing in case it's not Common Knowledge)-and a parent advocate-Robert Rummel-Hudson-were going to have a conversation and come to some mutual understanding or something. The background of this is that RRH wrote a post about some offensiveness in a movie trailer & that a parent or sibling of a person with targeted offensiveness might be offensive, Zoe wrote a post back that basically said "you're missing someone and here's why that's uncool" and the comments of both posts exploded the internet.

Having been around the autismsphere for kind of a long time, I wasn't sure how this'd go, but I do like to give people the benefit of the doubt; I assume that most people do the best they can and will evaluate things if they're presented with evidence that their way may be wrong. Yeah, I'm kind of an idealist. This contrasts pretty sharply with what I've experienced, but you know one parent of a disabled kid, you know one parent, right? Maybe the ones who are hostile are a vocal minority?


I encourage everyone to go read those posts right now. I'll still be here.

I think Zoe was the epitome of class in both of her posts. I really do. She is doing something very difficult very publicly. She is explaining some very rough concepts, concepts people get defensive about, and she is doing it for an audience that appears to mostly speak NT. Her 2nd letter was very good as well, possibly more difficult to write-what it was a response to was pretty infuriating to read-and clear and consistent. I'm a fan.

Ari is Ari. He covered a lot of the ground Zoe did, but differently, & he brings a lot of background in the kind of advocacy that people see into things. And of course the issue of parent-advocates making assumptions on what people can do because of their point of view (which is a logical fallacy that needs a name if it doesn't have one. Or maybe an internet law: As a conversation between disabled people and parents of disabled children progresses, the likelyhood of the adults involved's abilities being grotesquely exaggerated by a parent is directly proportional to the unpopularity of their opinion with said parents). A lot of the bigger picture issues were brought up, and, like Zoe, Ari was very classy in the presentation of his points.

So to recap what I've talked about so far:

Two autistic adults are posting on a blog that appears to be mostly parentcentric and secondarily professionalcentric. We're tertiary, right? Those two autistic adults are having an extension of a conversation in which there were many swings and misses and disconnects about whose voice should be heard about disability.

Said autistic adults are being a level of tactful that is neurologically impossible for some of us (and I applaud them for it). They are actually reading what is being said to them & appear to be considering other view points. And they are doing this knowing that there is this big power imbalance here, because there always is in this sort of thing-nondisabled privilege is a very real thing.

And oh my oh my is that privilege on flaming display!

I do not doubt one bit that RRH loves his daughter and that he wants the best for her. I do not doubt that 99% of parents love their children and want what is best for them.

I doubt strongly that RRH listened even a little to anything Zoe said. To paraphrase a comment, his first letter is like someone read several posts on how to shut down advocates and used it as a template. People always ask us what we mean, dismissiveness? Right there. The "Not Like My Child" and "Too High Functioning to Be Listened To"? Right there. Egregious assumptions about what people can do based on their ability to write coherently? Right there. Misunderstanding and misuse of the word privilege? Oh yeah.

It was appalling. It is inappropriate, ALWAYS, to say that someone with a disability isn't disabled enough to have a valid opinion. It is inappropriate, always, to have a "dialogue" without responding to what you are supposedly responding to. The first letter was an essay on why Zoe has no right to advocate! And that's unacceptable.

The second letter was not any better. It may have been worse. I mean, I guess I'm glad that RRH admitted that he thinks it's right that parents have the major voice in advocacy, but not because I agree-because then I know I'm not reading stuff in. Kind of like I appreciate RRH suggesting that disabled people are basically tools for parents to use in their quest to help their children-I have known without a doubt that people think like that. Very few admit it, but there it is in black and white.

We are not tools. We're often accused of using other people as tools, but I see quite the opposite going on here. Advocacy for a child belongs to the parent, but advocacy for the disability community belongs to the disability community. I love allies with all my soul. Anyone who says it's appropriate for allies to have more voice is not my ally.

The comments have been very interesting. I daresay they're more productive than the 'dialogue'. There have been some visitors who already get it. There are some who may never get it. But it looks like in the comment section, actual exchange of ideas is happening.

Twitter has been a nightmare, apparently. I'm not involved in any of the conversations, I would just like to register that based on screenshots I've seen, some people I used to think get it clearly don't. You aren't our ally if you tell people they don't need to try to understand us-especially if you are loudly demanding that we "have to understand" your point of view as a parent.

Overall I find the whole thing very disheartening. There was a genuine attempt at outreach from autistic people. There has been so much smacking down and hypocrisy. The upside is now I have a nice condensed example of exactly what I am talking about when I talk about the dismissal of advocates and abuse of the power differential that parents & professionals engage in whenever we do our thing.

That isn't what I want though. I want more. I wanted to be shown that my defensiveness around parent-advocates is generally unnecessary. I wanted the power differential to be addressed. I wanted an acknowledgement that disabled people are the primary stakeholders in discussions about disability. I wanted to be shown that parent-advocates, like disabled-advocates, are doing the best they can, that they will try to understand, that they can and will listen.

What I got was: Parents want disabled kids to talk and disabled adults to shut up. I hate being right so often.