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.

Crabbier Than Usual

This has very little to do with autism or advocacy at all, but the whole blogomania thing (and associated crabbiness) does have a reason.

It even has a reason beyond "people are shitheads, the patriarchy are shitheads, and the tragedy model of disability pisses me off!"

I was in a car accident Friday. It was low speed, no one is going to die, I was the only person hurt as far as I know.

BUT

I hurt like hell. I have no idea how I jacked up my back so much, but it hurts worse than a lot of gymnastics injuries I have had. Not being ready for the impact and jerking around probably is involved, I have no idea. Whatever.

Pain isn't my cup of tea. Vicodin tends to make me a bit cranky. Flexeril doesn't do wonders for my processing. And being bored off my ass because I can't do anything physical just makes all that worse. Oh, and being told that they're sure it's nothing because I can touch my toes? Yeah, not sure how to feel about that because I have Ehlers-Danlos Syndrome so of course I can touch my damn toes! and it's hurt since Friday and hurts worse and I'm a whiney baby. And I'm not even going there with the ER report, oh god.

But--we can expect more wangsty posts at least?

They taught me to not opine.

One of the main goals of autism 'treatment' is passivity. Unfortunately, they succeed at that. A lot.

Those of you who know me are laughing your asses off right now, because "passive" isn't the adjective most people think of when they think of me. But none of you know what it is to be inside my head.

They taught me that having an opinion is wrong. They taught me that wanting a say in what happens is wrong. They taught me that what I think and feel is far less valid than what anyone else thinks, feels, and wants. They taught me that standing my ground is among the worst things I can do.

And I internalized that.

I know, none of you believe me, because if there's anything I am known for it is standing my ground. But keep in mind-I don't give 2 shits what most people think, especially internet people. If I do give 2 shits what someone thinks on the internet, chances are good we are on the same side. We are fighting through the same things. And the stuff I stand my ground on, that I fight for with the whole of my being, it's often a literal matter of life and death-if not my life, someone's, somewhere. And that's worth it.

But what you aren't seeing is the panic and freeze. Every time I am asked for an opinion or a quick decision, even one that doesn't matter-often especially one that doesn't matter-my mind shuts down and starts racing at the same time. Do they actually want my opinion or are they checking to see that I have the right one? What if my opinion is the wrong one? Oh god. It's easier to not have an opinion. I don't have time to figure out the motive of asking and what my opinion is or how to say it in a palatable way. I'm not good at palatable ways, not even for innocuous things.

The way I do advocacy is the only way I can. Brute forcing through the panic, because those beliefs are more important than the very real fear of very real, terrifying consequences. It isn't easy. At all. It's like having to face a rational fear that developed into a phobia every day. But I have to allocate that energy-it's worth it for matters of life and death. It's worth it when other people like me are affected too. It's worth it when the listener doesn't immediately particularly matter to me (sorry. That's how it is) or they can't do anything to me.

But that kind of energy, on everything? I can't do it. The fear is too much.

Fuck yeah, passivity training. Hope you're happy.

A disclaimer I am no longer making.

Every time an autistic person says anything, ever, we have to append a big disclaimer. The "This only applies to me and my situation and I know nothing about your autistic child/cousin/sibling/indentured servant so take it with a grain of salt". It possibly has to have a functioning label attached too, depending on how much what we're saying pisses off the listeners.

Yeah. I'm not making that disclaimer anymore.

Obviously I speak from my experience. I have no other experiences from which to speak. I know stuff my peers say, and I can incorporate that into a more detailed response, but that doesn't change that my experience is mine & that is where I am speaking from. Functioning labels are a steaming pile & only useful when allistics want autistic people to shush, so I'm committing myself more fully to abandoning them, too.

No one else is expected to make a disclaimer like that when talking their own lived experience (please correct me if I'm wrong; I've never had to append such a thing to any statement I've made about being a woman or biracial, but that doesn't mean no one has). But the Just My Situation disclaimer is yet another tool used to silence what we say, & I am not going to condone that action by helping bring it to be.

Just like everyone else, I talk from what I know. I speak honestly from what I know. The palatability of what I say has nothing to do with its global applicability, & it is disingenuous to make such a get out of guilt free card for people who may be doing or condoning things that are really awful by making that kind of loophole available.

So, since that whole thing should be understood-that K knows what K knows-I'm not saying it every time I talk anymore. My goal in speaking isn't to make people feel bad about themselves, or good about themselves either. It's to say what I feel needs saying. If it's useful in a way that makes you feel good, fabulous. If it makes you feel bad, look at why it makes you feel bad. Then take what utility you can from that.

The disclaimer get out of guilt free card is now offline.

In Which the Term "Self Advocate" Irritates the Shit Out of Me

I don't like the term "self advocate" as it's used right now. The "self" should be a given, it should be understood. I should be a disability rights advocate, an autism advocate, an accessibility advocate, a neurodivergence advocate. Stuff like that.

I'm not, though, in commonly used language. In commonly used language, those terms-especially autism advocate-are about parents and professionals. Most of these people are not autistic. It's fair to say the majority of them have no disability whatsoever. So why the hell is it my description that gets a qualifying appendage? Why am I not the default in the work I do?

That's really what it comes down to, isn't it? Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it's seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what "real" advocates have to say. I'm just talking about myself, you see. They're doing the really real work, for we need the great allistic savior! We're cast as sidekicks in our own movement.

That, obviously, is wrong.

It is my movement. The accurate term for people like me (and a lot of people whose work I admire, and who I can't list here without it running 2 pages and me forgetting someone and feeling like an asshat) shouldn't be self advocate. We should be called advocates. Those people who are co-opting my movement? You know, the ones calling themselves advocates while telling us that what we say is less than what we say for a whole number of reasons? They can be allies, if they wish to work with us. Or they can be parent-advocates.

But the term advocate in this context should belong to us. We shouldn't be peripheral to the movement. It is ours. Give it back to us.

Existential Guilt.

This is a world that would rather I weren't in it. That's a thing I and many like me fight every day-the pervasive feeling of being reviled and unwanted, infringing on everyone else's wish for a normal, uncomplicated little life where everyone and everything makes sense.

I try to not let it bother me too much, but sometimes it does. Like right now. Right now I feel as guilty for existing and subjecting other people to me as I imagine people who accidentally run over their children's pets in the driveway do.

There's just a lot of stuff that pours into that, you know? There's this ever present narrative that people with brains like mine don't deserve to exist. There's the deficit model of pretty much everything. There's all the everything about how hard it is to know or like or love or be friends with or consider human someone of my neurotype.

Then I go climbing, or try to, and they won't change the music to something that isn't seizuregenic. Hell, they don't even understand why I asked, or why when they made it out to be the HARDEST THING IN THE WORLD to change the Pandora station to "not electronic techno whatever the hell this is" I wanted my money back.

So it was a bad day and then we're in a car crash that was totally not my friend's fault in any way and it turns out my steroid injection is expired and no one at OHSU understands that even minor car accident + inadequate steroid cover = pretty big deal. And I sit in the ER waiting room in a cervical collar for 3 fucking hours, my pulse hovering between 46 and 52. And then they look at me and with my vitals in this whole BARELY ABOVE DEAD range and still argue about whether or not they should do more steroid cover.

Yeah, jackasses, someone with documented adrenal insufficiency is presenting in your ER after an injury (not a broken anything, but I TOLD YOU THAT MYSELF) with dizziness, low blood pressure, alarm-ringing-low pulse, nausea, etc and you decide to get in a power struggle about what to do about it? The only thing that would have made that better would have been if you'd offered me a medication I was allergic to.

Oh wait. You did. Because people like me aren't even worth the time it takes to review a chart.

So not only does society at large not want me to exist, but the people who are paid to see to it that I don't die are more concerned with being right than anything else.

And my back hurts. And I feel bad about my back hurting. How dare my back hurt, when I am so many other kinds of shitty to have to interact with any way? Who the hell do I think I am, to think that I'm allowed to feel bad and feel postictal and not want to die in the ER?

So you throw all that together, along with the knowledge that the failure of rock climbing + the car accident and subsequent ER visit totally fucked up my friend's day, and I feel like shit at the bottom of the ocean just for existing.

I keep seeing and hearing and being told that it's irrational and unacceptable for me to demand or ask for or even suggest that maybe something could kind of be not a big battle for me. But no. How dare I exist, how dare I think I'm human, even a little? Who the fuck am I to have needs and wants and try to get them taken care of?

So yeah. I feel inordinately irrationally guilty just for existing. Hope the autism tragedy complex is pleased.

Time for me to learn to cook

I don't cook. Too many steps, right? You have to collect all the ingredients and get them ready and put them together and then keep your eye on the time and then clean up and then finally you get to eat, assuming you haven't collapsed at the overwhelm from all the steps, right?

Well, uh, cooking is cheaper than not cooking. So I'm going to try-again-to learn to make food that's not macaroni & cheese or a peanut butter sandwich or cheese melted on cold cuts (shush. It's good. They're like cheap h'ors d'ouvre).

If anyone has recipes that aren't too complicated that they'd be willing to share, please pass them along! I've got high protein and calorie needs, so I do eat meat (except shrimp. Deadly allergy is deadly). Right now mac & cheese is my complicatedness limit...more steps than that and I tend to get a bit overwhelmed. And I have kitchen anxiety the way a lot of people have test anxiety (that's a story for another time)...but I have way more anxiety about collapsing from not eating enough. So yeah.

If anyone who has the magic power of cooking can share, pleasepleaseplease!

'Overcoming' Is Not a Moral Obligation

When you are disabled, there are a couple things that are expected:
a) people will say you can't do something
b) people will push you to do that thing anyway

And if people can and want to do the things they "can't" do, good for them. I support people's rights to push their perceived limits.

What I don't support is pressure to push any and every limit intrinsically or extrinsically imposed. Given everything else that we do (like having to fight for our right to be seen as human), developing a knee jerk reaction of "watch me!" when someone says that we can't do something is just asking for long term burn out.

Sometimes they're wrong, and we can do that. Sometimes we just can't, and that's ok. Sometimes we kind of can, but the energy trade off just isn't worth it.

Society demands that we keep overcoming, overcoming, overcoming. But we don't have to. Nowhere is it written that to be a really real human you have to brute force your way through your limits. Nowhere is it written that not doing so makes you less worthy. For most people, constantly refusing to acknowledge that you have limits is seen as a problem. We all have limits & we are supposed to acknowledge them, know where they are, work within them.

But when you have a disability, it's like everyone expects you to push past your limits all the time. They want to be inspired, or they want to not have to deal with the fact that a disability means "there are things I cannot and will never be able to do", even as they expect me to know there are things I can do that they will never be able to.

So we are pushed to keep 'overcoming', and if we can't we are failures and lazy. But if we can, we aren't really disabled. It's a no win either way. Our choices are be burned out or be looked down on even more, be told we aren't disabled because we can do xyz or because we can't.

Feh. That is all.