Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Wednesday, September 4, 2013

*Cries*

Trigger Warning: Erasure, ableism, meltdowns

I am dealing with too many messes right now. Just too many. The Feminist Wire is still being horrible. They said they were engaging, but that kind of involves talking to the people having the problem and they're not doing that. At all. Even the thing where they said they were engaging (conversation off this tweet)? Wasn't doing that. Mama Be Good may be an awesome parent of an Autistic kid, but she's still a parent, not herself an Disabled person having access issues with their call. Part of her awesome is the fact that she recognizes that, and actually talked some about why them talking only to her on Twitter is bad. And I've sent them an email that's been unanswered since August 29, which is before the tweet where they claimed to be engaging. And just a reminder that they did, in fact, think that this was a possible solution to cognitive inaccessibility.
Dear Alyssa,
We appreciate your feedback and comments.  We've discussed the concerns, and rather than rewriting the CFP again, or creating multiple versions, we invite you (and others) to share your own interpretation of the CFP with your communities.  This seems to us the most reasonable and helpful way to proceed.
Best wishes,
Editorial Collective
I tried that, by the way- it didn't go well. We did find someone willing and able to translate, but since The Feminist Wire isn't talking to me anymore, or really to any of the actual Disabled people who have issues, much at all ever, we don't know how accurate it is. It feels like maybe they're doing the "ignore them and maybe they'll go away" method of social media crisis management. So I may have escalated, and Thinking Person's Guide to Autism tweeted at them too. (I asked them to.) (I have some issues with TPGA, but I can be pragmatic and this is a sufficiently clear-cut issue that I thought they might tweet. I was right.)

That's The Feminist Wire.
Now China.

I'm in China! Yay! Also, my medical exam didn't have a stamp across my picture from the doctor because that's not something we do in the USA. It's just not. The doctor doesn't even have a stamp for that. So I and everyone else in my program had to re-do the medical exam, including a fasting blood test. It was loud and busy and crowded, so I was pretty overloaded by the time we were done. And instead of going straight to food? Because it's now noon and no one's had breakfast and I didn't have dinner either? We go to the entrance-exit administration to get residence permits. Guess what they want? PHOTOS! Guess what else they want? To take them themselves! With flash! Such a strong flash that I'm jumping a foot from it while I'm not even in the same room! Yeah, that's not a thing I can do, and certainly not while overloaded and really hungry. Cue first public meltdown of the day. In the entrance-exit administration of Tianjin. Yup. That's great. /sarcasm. Then we got food as a group, and, um, spending what I would normally spend on a meal and a half to eat at a place that's overall less noisy but has more of the sensory issue sounds and not actually get full? Yes, that's wonderful. And the suggestion? Eat more for dinner. Oh, wait, we're supposed to do something right after this with people showing us how to get to the other campus, which is something I'm supposed to remember. NO I CAN'T STILL BE HUNGRY FOR THAT, YOU WANT ME TO REMEMBER THINGS. Also we only got 15 minutes break between these things, which I spent curled up in a ball having a quiet meltdown in my room. Which meant that I wasn't able to get food. So I go downstairs to meet people. And it's pouring, so I don't have my laptop, which means I don't have AAC. And I'm only semi-verbal, even in Chinese. They decide they're going to wait for the rain to slow down a bit before doing the thing, so I tell them I'm getting food. They come up with lots of other things they think I should do, and I'm all out of politeness energy, so what comes out is “如果我们不是现在出去的,我是现在找吃的。” (If we're not leaving right now, I'm finding food now.) In response to a suggestion that when we leave (which we're not doing because we're waiting for the rain to let up some) we can get me food. Which isn't actually a good thing to say to a teacher. Students are supposed to be deferential and all. BUT teachers are also supposed to look out for the well-being of their students! And they weren't able to do that.
Then once I was back, they wanted me to introduce myself. I've actually got a script, but I was kind of mute at the time? So I wound up gesturing and no one understood what I was trying to gesture and then I wound up curled up in a ball under the table having a second semi-public meltdown. Yup. So I'm kind of scared now, since I melted down at least semi-publicly twice in a day and my program is super-selective and all.

That's being in China.
Now stuff back on campus in the USA.

Um. eCampus says I'm just a grad student now, and I was just an undergrad over the spring and summer. These are false. I've been both since Spring 2013 and will remain both through Spring 2015, when I graduate from engineering and Chinese. Enrollment services, who do most of the eCampus stuff, think I should talk to my advisers. But wait! If I'm not enrolled, I don't actually have advisers, do I? Thankfully my advisers who I should have are still acting as such, because they are cool like that. It's also messing up my financial aid, because you can't get aid for programs that you're not enrolled in and as far as aid goes, eCampus=reality. The problem is that eCampus is not matching up with reality, and I've never been able to make enrollment services fix anything without showing up in their office before. So once again school is messing stuff up. See also: reasons I don't trust schools to do things right ever ever ever. At least my Chinese adviser has said that if there is anything she can do to help, I should let her know. I told her that going to Enrollment services and yelling at them might be it since I've never gotten them to fix anything without going there in person before. : /

So that's my life. I've also got various papers to write, and the Chinese flagship people are now thinking I shouldn't take the math class I want because of the hours it meets (it's evening) and ugh. Stop. The amount of messiness I deal with to get and keep classes and stuff I want/care about? Fairly high. For stuff I don't much care about? Near zero. So you all should probably just let me have the classes I actually want? Like, the language classes are being described in ways that sounds like they fall under "obnoxious stuff I'll deal with so I can have my direct enrollment classes." 

3 comments:

  1. Hang in there, dear. Sometimes just closing your eyes with hands over ears for even a minute really helps. I wish I'd known as much as you do at your age! Good luck!

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  2. ((hugs, hugs, and hugs, Alyssa)). I've been thinking about you a lot in China. Sending lots of well wishes and spooooons and a giant LAAAADLE to you. It must be SO difficult. And the language thing always completely wears me out - even though I love it, it's exhausting. ((hugs))

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  3. Oh God, fasting blood tests! Ugh. :(

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