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.
"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.
ReplyDeleteAnd 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."
K...all of the above is very, very useful to me. Thanks for describing and summarizing it so clearly. The way you've put it--just as you've put it--lays it out in a way that cannot be misunderstood or dismissed. I think that exactly your words should be posted all over the blogosphere.
Had I had any of this in mind when posting on that Twitter feed--had I even had in mind a broader perspective instead of just focusing on encouragement--I'd have made it more clear which group I was thinking about at the time, which was *not* autistic people.
Great post.
ReplyDeleteI think that part of the problem here is the medium. Twitter is not particularly conducive to nuance or complexity of either thought or tone. So there is nowhere to explain your thought process, what you mean, what you don't mean, and so on. There is no way to even make your tone particularly clear. Misinterpretations are inevitable. So Twitter is probably not a good choice for carrying on discussions regarding issues facing autistic people, where the problems are complex and the pain goes very deep. And of course, in such a terse medium, trying to have a dialogue about having a dialogue probably shouldn't happen again. :-)
If these discussions do end up being carried on Twitter, it's probably a good idea to ask for clarification before drawing conclusions, because the problem (as in this case) could very well arise from the necessity of communicating one's intent in a very few words, rather than from the intent itself.
I am both autistic and a parent, and when I read the Twitter exchange, I came away with a completely different interpretation from the one that most people seemed to have -- and it was very close to what, as it turns out, Emily actually meant. I think it's because I tend to do a lot of reflective listening in my every day interactions, in which I reflect back to people who might be upset/angry/in pain what I understand them to be feeling. To an outside observer, it might look like I'm actually agreeing with everything the person says, but I'm not. I'm just trying to acknowledge the person's sense of their own experience so that they can open up to dialogue. I think that's akin to what Emily was attempting to do, and why I interpreted the exchange as I did.
I think if TPGA hosts further discourse and wants to ensure the appearance of neutrality (without which I don't feel these dialogues can be successful), they do need ground rules for editors in terms of publicly engaging with participants in conversations about the dialogue, outside of the dialogue. I think for everyone's benefit, this would help avoid (unnecessarily) messy situations like this one.
ReplyDeleteKassiane, continuing to learn oh hell a whole lot from you, thank you.
ReplyDeleteThank you Kassiane. I really appreciate this post.
ReplyDeleteHi K,
ReplyDeleteI was going to post another comment, but it got too long and now appears as a post on my blog. Feel free to come over and comment if you have the time.
Rachel
www.journeyswithautism.com
This comment has been removed by the author.
ReplyDeleteSo I only let that through as an example of the asshattery and bullshittery that I really hate.
ReplyDeleteDon't come here and post your godsdamned advertisements.Especially your advertisements for godsdamned offensive puzzle piece crap that implies that all autistic people are children. ESPECIALLY especially when I blog about how awareness is bullshit.
Sweet Raptor Jeebus, can people not READ?