Tuesday, January 10, 2012

Using our nice words

Taking a deep breath and swallowing a perspective pill. Standing up for your rights and defending yourself does not mean being militant. Make that the mantra of the day: "assertive, not militant. Assertive, not militant."

John Elder Robison's comment about twisting words hit me in the gut. It's time to disagree with tact. Ah-heh-hem:

I only felt upset because I am what is considered a high functioning autistic person and I felt like Mr. Robinson was making generalisations about 'my kind' that did not at all match who we really are.

I agree with Vicky's comment, "Well, if I came off as mean-spirited, I sincerely apologise. I guess I'm just sick of the constant drumbeat of criticism surrounding self-advocates (not from everyone, but enough people) and what our motivations/goals may or may not be. "

I felt unfairly judged and lashed out. It's something I'm working on.

Let's try this again. *humbles self*

 I believe that everyone needs to be given a voice and that everyone's choices need to be respected no matter how they are communicated. I grow nauseatingly weary of the NT/high functioning/whatever else community assuming that there is 'nothing going on in there' when someone is nonverbal, and therefore choosing not to offer alternative communication options of any form. I have a friend who blows kisses for to communicate 'yes' or 'I like that'. Not everybody wants to 'listen' to him. I kind of took it out on Mr. Robison. I stand by my views, but I won't bite anymore. No more Miss Mean Kitt. Sorry for being so... grrr.


  1. I have, since long before I was ever labeled ... diagnosed ... that humanities greatest weakness was it's own general lack of perspective. Doesn't matter what the issue or cause is. Back in 2nd grade was the first time I ever really became aware of the word retard. Because the way my father started using it against me, constantly, violently even. I and the community of man was a ways off from having words like autism or aspergers, let alone the apparent difference between "high function" or not.

    But in second grade, because I couldn't read at all, and had a history of trouble behind me, I was a retard. The very real threat of putting me into "remedial education" come 3rd grade combined with my fathers violence because "I told you there was something wrong with this kid, she's a retard" left me melting down all over my Mom and my father stomping off.

    I have periods when folks can't get me to shut the hell up as my father used to say, and periods when I can't make a sound. I have periods when I hear everything too loudly, and periods I can't hear at all. Yes, without question it can be a pain for folks around me, but I have often wondered if they ever once in their rush to deal with the Sami problem stopped to think about how it felt to be me.

    And this, near as I've been able to tell, is where most human interaction comes apart. Because even in the NT world, a world I've spent 49 years watching from the outside, trying to get in, they don't seem to be much better at dealing with each other than with us. And they want to "fix" us? Really?

    For me, every new person, being I meet, is a blessing, a chance to learn, to grow, to communicate. I don't (it appears I really cannot) judge, I just find the ways that work, the bridge for communications, and ways around my own limitations if I can.

    I talk with anyone willing to communicate with me. With bipeds that often involves written, read, spoken language, and so far the only one I've developed an real facility with is English. But it's still at best, a second language for me. It's tedious, confusing, imprecise, inaccurate, and of course full of stuff that leads one on a merry path to no where. Then there's facial expressions, eye contact, body language, subtlety, nuance, humor, sarcasm and so forth... A right sorry mess it is. Then you can add tone and emotional expression onto that...

    I'll be honest, I've often found it much easier to communicate with quadrapeds. Nope, not a joke. But hey, that's just me.

    There is always going to be an us and a them. And for as long as there is, everyone will be wrong. Because it's exclusion, fear, othering, exclusion. Until we can all, NT and NA/ND/Autistic whatever we all call ourselves meet with love and understanding, there's always going to be an us/them dynamic going on.

    Me I'm just a newly diagnosed autistic who has been fighting her way through an alien and confusing world, learning to try to get along, without getting abused (been a LOT of that in my life.) or otherwise used and discarded. As I understand it, in the Autisitic community there seems to be some nonsense going on I'm still trying to make sense of. Some of it seems to surround the "Autism Speaks" movement who doesn't speak for me. Mainly because I have enough trouble speaking for me, let alone some strangers I don't know and have never met who seem to think they know who I am and what I'm all about. People who outside of what they do, or don't understand, seem to be really good at taking money, making gross, contradictory, even horrific statements about us, but not very good at using all that money THEY collect for us, on US. Instead they seem to be really good at paying themselves, and spreading around the money in places that doesn't really help US.


  2. ...more...

    So I'm still figuring things out myself. As I seem to understand things though, it seems like (if it's the same Mr. Robison) he doesn't seem to be very happy with Autism Speaks because they don't seem to speak for us. Again, as I understand things so far, he's Autistic too. But again, I'm not going to stick my head in there either, because I don't get the difference between the various parts of the community from the inside either.

    But a hard lesson I've learned over a lifetime, is even when the right words are used, sometimes they are used the wrong way. In purest sense of the word, when I was in grade school I was retarded. In purest sense of the word, 40 some years after having that thrown at me for the first time, I'm still retarded. Just now we call it Autism and know better how and what to do about it.

    It still makes my head and heart hurt. So I keep doing the best I can with what I have to work with. Sadly for many people, that's often not near good enough. At least I've learned that's more about them than it is about me.

    I hope this made some sense, and I hope I did not offend or annoy you. But I do know, that sometimes, we must be Ms. Mean Kitty just to protect ourselves. And being grrr, well that's fair warning someone stands a chance of getting scratched or bitten where I come from. I have to go read the rest of your blog now. Hiya Kitt, I'm Sami, I'm autistic, and I love Cheescake too. A lot. But when I was younger, I couldn't eat it, so I get to eat extra now that I can. I also love salt, and eat lots of that too, because I have a weird genetic disorder that causes me to need LOTS of salt or I get sick and can die. So yeah, weird girl here. :)