Note For Anyone Writing About Me

For anyone who wants to write about me
I am an Autistic person. I am not a person with autism. Don't call me one. FYI, also not Aspergers. The diagnosis isn't even in the DSM anymore anyways.
My name is Alyssa, I'm a triple major in mathematics, mechanical engineering, and Chinese. I'm currently studying abroad in Tianjin. I have an About. I'm Autistic. I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Sunday, November 23, 2014

"Live" blog of my presentation to the Five Project

The Five Project is an autism organization of some sort (I actually didn't know much about them other than that they wanted a presentation on autism and neurodiversity, and now that they liked it and are apparently hoping I'd be willing to do something like it again.) I wrote a script that was kind of a mix of English and Chinese but mostly English, Vivien (an exchange student working with Steven Kapp) helped me translate, and then I recorded and edited a video that was mostly along the script, though rarely actually identical. We each updated the script to match about half of what I actually said. And then yesterday morning, I logged into the virtual presentation, which I live-"blogged" into Notepad++.

Now I'm sticking that here.

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IT IS HAPPENING NOW AND I AM A BALL OF NERVES.
People are interested to hear me talk, and they're impressed with my ability to speak Chinese, and they're not NLMC-ing at the moment (there's time yet and considering the opinion folks tend to have of white people's ability to speak Chinese combined with my actually being able to speak I'm expecting it any minute. Wonder what it looks like in the more subtle/委婉 Chinese way.)

Not a lot of comments going on at the moment, which is OK with me. I can hear comments arrive, and I can hear myself talk (ugh I sound so not-fluent, even compared to my usual Chinese, reading aloud sucks), so I can do something not particularly thinking intensive to try and distract myself from my nerves until I'm needed.

want to add "很多人以为自闭症有悖于好好生活。" (A lot of people incorrectly believe that autism contradicts with a good life, ish.)

Just learned that 卡=lag, that's cool, but the reason for learning (apparently the meeting room and video are laggy for some people) is less cool.

It's a good thing we did transcript because of the lag. Captions wouldn't have solved the lag problem, though I do still want to get those done. I have less time pressure on captions than we did on the transcript, so that's good.

At the bit where I say "my carrying my computer around isn't because I want to be able to play computer games whenever I want" in the video, I typed "(I also like to play computer games)" and that got a laugh. Typed in Chinese, of course.

Oh yay, comments so far including folks saying "huh, never realized that" kinds of stuff about the sitting still and not stimming taking the energy we could use for learning.  And needing to learn to understand our body language rather than assuming we have none or assuming it'll be like neurotypical body language.

Still no sign of "not like my child," I am so confused. Happy, but confused.
Also convinced that not like my child is coming in the Q&A, because it's not like that's how things usually go or anything, and it's not like I have anxiety or anything, of course not!(SARCASM on the "it's not like" statements.)

Q&A has a lot of "when did you start typing" and "what'd you do in China" type stuff. Also some questions about kids, and about managing sensory sensitivities. How is there no NLMC I AM CONFUSED.

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Note after: No one did the whole "not like my child" thing. I wish that didn't surprise me, because it should be typical.  But I am surprised, and getting "not like my child"-ed at is a common enough problem that We Are Like Your Child exists, and is a thing I contribute to sometimes.

I've actually been asked if I'd be willing to do something like this again. And I totally would. I'd let people share the video, as long as credit to me for actually saying all this stuff and Vivien for translation+transcripting help. It's on Youtube, not captioned yet so still unlisted, but I know Youtube is blocked in China. 

Thursday, October 16, 2014

Open Access (And Thunderclap)

Depending on how well you know me/how long you've followed my blog, you might or might not already know this, but I do research in a few different areas.

One is disability studies. For that, I tend to cite blogs really heavily, partially because I think Disabled voices need to matter and I know lots of Disabled bloggers (plus the publishing cycle on a blog is way faster than that on a journal.) But I do sometimes run into academic journal articles where it would be helpful for me to be able to read it, and then I can't. My university ID gets me access to lots of articles, but not everything.

Another is engineering stuff, sometimes assistive tech from a social model perspective when I'm combining the engineering and the disability, sometimes nanotechnology research, currently including a design project so I can graduate. This uses more stuff that's published in academic journals, so I run into the problem of paywalls and not being able to get articles a bit more often.

Then there's pure math. I'm playing around with Lyness equations right now, letting things be negative. Not much has been done with that, but there's one article that I know exists and that I know lets things be negative. I can't get at it. I'm frustrated. Open access would help.

And yeah, I do think researchers should be compensated for their research. That's not what the money being paid to journals is generally going to, though. Authors send their stuff in for free, so it's not content creators getting paid.

Academic publishing is currently a system where academics aren't always able to get their work to the people who could use it, and the people who would be building on it aren't always able to get at it. It's a problem. Open access stuff is at least a start. (A complete overhaul of the system would be good, really.)

Hence a thunderclap about it. I care about this. Maybe some of you lot do too?

Tuesday, October 14, 2014

#AAC Awareness Month

It's apparently AAC (Augmentative and Alternative Communication) awareness month all October.

I'm a big fan of AAC. I'm not a big fan of it being considered alternative, rather than just being one more equal way of communicating. I don't much like the idea that it should be an alternative, because that suggests that if you can use "typical" communication, then you should. My oral speech sounds pretty good, superficially, so people tend not to realize just how much I'm not able to do with it.

For example, there's a thing called "fluent in requesting." What this means is having good use of the grammatical structures involved in asking for things. I want, can I have/borrow, could you please, etc. Or in Chinese, 我想要,请给我,可以把————借给我吗?,你能做, and quite a few more. Yeah, I know the words to ask for stuff in two languages.

I usually can't initiate a conversation where I'm actually going to ask for something in either. What I can do is type the request.

Or if I'm having a problem. Maybe I'm overwhelmed. Maybe I feel sick. Even though I know all the words to explain what's going on, again in two languages, I probably can't tell you orally in either. But I can type to explain exactly what feels wrong, and possibly how to fix it. That's a big difference.

It's also something I would never have the ability to communicate if I didn't have access to typing. (For things at a distance and for writing school reports, I've had this for a while, because typing is expected/accepted in both those contexts. For face to face communication, I've been typing part time for about two years, maybe two and a half? I started using writing to cover some of that space before typing, but my handwriting is terrible and if I want my computer to say the words for me I should type it rather than hand write anyways.)

Because of how much typing to communicate has helped me, even though I'm not the picture of a "typical" AAC user most people probably have, I really do support more people knowing about AAC. I'm a big fan of folks knowing that some people type or use picture cards or apps to communicate, and a big fan of folks knowing that some ADULTS do this at least part time.

The adults bit is key too. Most of the AAC awareness stuff that I have seen is parents writing about their kids, professionals writing about the technology they use or the kids they work with, that sort of thing. Very little is actual AAC users writing about their own AAC use. (Ballastexistenz is one exception, and Typed Words, Loud Voices is going to be entirely people who type ourselves, but by and large, the promotion is done by adults talking about kids they are close to, not by actual AAC users.)

This means I am in two categories where people tend not to think of AAC: adults, because who ever thinks about disabled adults who are off doing adult things while also acting disabled; and people with some (in my case quite a bit of) oral speech. I don't think I'm actually rare among AAC users for either of these things, or even both at once, but I know that people like me aren't much of the conversation about AAC use. I know there is a lot of pressure for people with speech to use their speech as much as possible, though, even at the expense of actually communicating.

And finally: I'm a big fan of folks thinking about how much communication is typed when we aren't face to face, and wondering why meeting in person makes the typing somehow "different."

Image is of a jeans pocket, with orange background and orange text that reads "I use AAC." It's a profile picture from PrAACtical AAC.

Saturday, October 11, 2014

#WalkInIssysShoes

Warning for mentions of attempted ableist murder.

Isabelle Stapleton survived a murder attempt by her mother. You would think it'd be clear that she is the victim.

BUT!

Isabelle is autistic.

This means people view her mother as the victim, as the person to have sympathy for, as the person whose shoes we should walk in, according to that old metaphorical statement. This means people expect us not to judge, because... apparently "Don't try to kill your kids" is an unreasonable bar to set? (Not everyone is Christian anyways, I'm not! But the statement is "Judge not, lest ye be judged," so it sounds like judging by a standard you're OK being judged by in turn is still fine. And I'm totally fine with being held to the standard of not killing my kids, or I will be once I have them. Right now I'd mostly be confused by the current impossibility of my failing this standard.

This means people may not even admit that Isabelle has a point of view. Yeah. Isabelle's a person, she's got a point of view, and in terms of the "Walk in someone's shoes" metaphor, Isabelle Stapleton has shoes. She probably has literal ones too, because most people don't hate wearing those as much as I do and I still have to deal with wearing them a lot of the time.

Anyways. Can we try having some sympathy, empathy, etc for Issy? You know, the person who survived her mother trying to kill her?

Seriously. I only have one thing to say about Kelli Stapleton, and I've already Tweeted it:

Tuesday, October 7, 2014

The Set List

I think rather echolalically at times. I use lyrics a lot for this.

So I've been throwing around in my head the idea of what set list I  would choose for, say, a concert "for autism." Which is totally code to get more people in in and then hit them with reality in the form of angry Autistic singers. (Mostly Autistic singers- there's a couple songs  I think should be a mix of Autistic and non-autistic singers or just a non-autistic singer, depending on choral arrangements (a cappella is awesome) or more typical band with lead singer sorts of arrangements.)

So, in order:

  1. Numb, by Linkin Park.
  2. Strangers Fate- first verse and chorus (possibly with first verse of One and Only for a medley), by High Tide, now known as The Saturday Nights. As far as I know, there are no publicly available recordings of Strangers Fate anymore, but here's a link for One and Only.
  3. The Jumper, by Third Eye Blind. I think this song should be either mixed or non-autistic singers.
  4. People of the Sun, by PONS (another name High Tide/ The Saturday Nights have gone by.)
  5. King of Anything, by Sara Barellis. Specifically, I want the version used in the Loud Hands Project video. And to have the video part (not audio) going in the background. Synchronization would get interesting.
  6. I'm not sure if I want to finish with Defying Gravity, straight up (Glinda would be a non-autistic singer, Elphaba would be an Autistic singer) or with a blending of Let it Go and Defying Gravity, similar to Let It Defy Gravity but not with the exact same set-up. I'd want to end on Defying Gravity, not Let It Go, and I'd do some of the transitions differently. (Also make Let It Go way louder and and more blatantly defiant than it's being sung.)
I'm not entirely sure about the order of Strangers Fate and Numb, because I'm not sure if "basically losing" (Stranger's Fate) or "knows what the goal is and can't see how to get it" (Numb) is the bigger "low point." But it's those two, then The Jumper, which is fairly straightforwardly someone saying "Just leave it all behind and get out, your life is more important than all that stuff." 

After that, we turn around. People of the Sun still doesn't feel like all that successful a rebellion or of fighting back, but we've got denial that the other people know better and the idea of starting a revolution. The King of Anything video makes a really good transition from the bad space prior to there actually being some revolution type stuff going on. There's momentum! And then Defying Gravity (and Let it Go) are pretty direct defiant middle fingers to expectations of what's right and possible. 

Long story short, BRB figuring out the lyrics and transitions I want for my personal Let It Go/Defying Gravity Medley to close with.