Friday, September 23, 2011

"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.


Heldenautie said...

Whole heartedly agree (as if there was any doubt). Will post something more substantial later.

Anonymous said...

Zoe and Ari are really cool, their post are really good.
I am a extremely naive person (strange considering everything I have seen), so I hoped things would be better, I hoped a dialogue would happen, but it didn't, it was two Autistics talking and being ignored. I did really like some comments from advocates and parent-advocates and I really hated other comments.
I do wonder if this even matter so much to me, in my country there is no Autistic community, that's why I love the internet.

Anonymous said...

K, I disagree!

Unknown said...

I am a parent, but am so overly involved in life and enjoying time with my son (who has autism) that I stay away from the internet a whole bunch. So, this whole debacle was news to me. But, I have been reading are right.

Parents can advocate for their minor children and help them as much as they can/want to. But, their parental rights end where the adult rights of autistics begin. The neurodiversity cause is awesome and deserves my support, because you guys are teaching parents what can be offensive or insensitive or just plain wrong. Oh, and you are working on making life better for our minor children.

I don't want to 'cure' my son of anything, because his autism is what makes him great. Autism came to our household and made things better. I also realize that people like us might not be the status quo and if it isn't, then that needs to be addressed.