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

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Saturday, August 31, 2013

So Much For Interpretation

Trigger warning: Ableism. Uh. If being told that if you want access you need to do it yourself is triggering, that. 

So, the editors at The Feminist Wire invited me to share my interpretation of their call. I don't think this is quite what they meant, but what they meant is a thing that's not possible: If I could understand their call well enough to really interpret it, we wouldn't be having this problem. Or, in terms of access needs, if it were written so that I could understand it, we wouldn't be having this problem.
They inspired my abstract for a text chapter, so I at least get something out of this mess. [Social media crisis still on because they still haven't actually done anything that makes their call understandable/accessible. Also they said in this Twitter conversation that they weren't being exclusive of disability because one of the writers is deaf.]

At the feminist wire, they want to make feminist stuff. And also they want to ?????? relating to feminism in how they edit. They say this means talking to the writers and helping people revise. Which is cool, but I'm not sure how it relates to feminism? Also they say they take reader ideas and criticisms seriously [I do know that critique is a fancy word for criticism.] Since I already had a ?????? moment in this paragraph, I'm not sure I believe it, but maybe it gets better.

The call went online yesterday. [Well, not yesterday anymore, but yesterday when they wrote this thing.] A bunch of people said stuff about how they're doing the exact stuff they wanted to stop from happening. #irony. That sentence is written in academicese, and it took me a while to parse, so I'm going to go with not accessible. Sad.

Some people said that focusing on the body instead of the mental or the cognitive was excluding certain disabled people. [I didn't understand enough of the original call to tell you if they did that, which excludes cognitive disability anyways. So...] We didn't mean to do the thing? I think the thing is specifying kinds of disability to talk about? They say that people telling them this reveals a problem. Therefore they word salad broadly. What they word salad about is unclear, but it has the word broadly so I assume it's broadly.

We also got emails on how the call was inaccessible. WORD SALAD about people with disabilities, therefore the language is excluding. Pity the language is still excluding enough that a disabled academic can't parse it! Ok, I know what “reduced access to higher education works to perpetuate a cycle of ableism” means because it's a thing I say in different words. It means “Disabled people have a hard time getting to college and then....” ok scratch that no I don't know. Then this does something that makes discrimination against people with disabilities worse. I think what it does is interact with classism, except they don't say classism here, just ableism. So I don't know. There's a disjuncture... is that like divide? Ok, got a dictionary, it's like divide. Or close enough. There's a divide between academics and activists. [Well, not always, I'm both. And quite a few of my friends who are complaining are kind of both too. I present at conferences! Disability Studies conferences! And they're accessible to me!] So... are they maybe trying to say that they just continued a thing that's already there? /annoyed because this is worse than anything I've seen in disability studies, so no you're not. They “get” that lots of... actual marginalized groups? I think that's what communities on the front lines of oppression means. They “get” that actual marginalized people often find academia to be the oppressor/help the oppressor. Yup. Like with this call, actually. That's exactly what happened, and given how much of this is me going ????? or WORD SALAD or needing a dictionary or not getting what you're saying? Yeah still being the oppressor. I think the word gatekeeper applies? The feminist wire wants to stick stuff in the middle of academia and activism, but academic-ish means... word salad? Word salad that I've been told is just bad writing. They want to make the forum accessible, but what I assume to be other thing they want is written in a way that's totally not accessible so this clearly didn't happen.
There's a revision below this! We revised it! We added things! Also, thanks for calling us out and asking us to do better. But also thanks for a thing that you didn't actually do but we'd like to think you did while we say we did a thing we probably still did wrong. Because this apology really feels like it's about them, not the people who are getting excluded. Mainly because it's written so that the excluded folk still don't know what's being said. Also, we need to do hard work and look at how we make stuff work, and respond fast with thanks and doing stuff. [Except that this thing is totally not actually fixing it and shouldn't count.]
Disability is coming up a lot, name a conference, say it talks about disability, gender, sexuality, and focuses on animals [why] chronic pain/injury [makes sense] and trans* ???????? thing. Also folks in insert words here are criticizing disability stuff?
We like interdisciplinary stuff. Also we're confused/wanting to know what's up with suddenly DISABILITY. We want to know what it means for disabled people when disability is used as ?????? with human-animal relationships. Do they mean when it's a metaphor? I hope not, that's a bad metaphor. Don't make comparisons you don't understand and all that. The ??use?? of disability and ???????? bodies that aren't typical?????????? in stuff that's not disability is ick? Needs people explaining why it's ick? Needs to be looked at through ickyness?
So we thought ????????? about rediscovery of disability stuff??????[as opposed to why it got ignored in the first place]????? and it getting used badly in other stuff. And we ask bad “why” questions. And we ask stuff about mixing things I don't know. Something about disability studies, that's a thing I do. And word salad about exploring? Something about learning from activists.
We want to challenge ick, so we want to have people write stuff? And we ask a bunch of questions?
  • What does disability mean? I think. Also maybe intersections. And me wanting to know why disabled is in quotes.
  • Intersections list other oppressions want to know a thing?
  • Talk about ??????? with race, class, gender. And norms. And other words.
  • Feminst disability thing? Words. I dunno.
  • Disability and monolith are both in this sentence. I really hope it's about how disability isn't a monolith, but word salad.
  • … isn't that the same as feminist disability? I don't think you've got the right to the word "crip" though. I'm not sure I do, though if not than the choice of it to represent disability is part of excluding my kinds of disability.
  • What are activisty people doing?
  • Who isn't here? Maybe “what stuff would they be saying?” But we can't know that because they aren't being heard. So maybe we should get them in instead of talking about what we think they would want?
  • What is disability?
We want academics, writers, and activists to talk about the things. Pile of formats OK. Not sure what all the formats really mean, but OK. Submissions due by October 10, 2013, and can be submitted through a thing with a link. Email if questions. Look at the guidelines first, and give a title. Label the submission Disability Forum. Not sure if I'm supposed to make my own title or title it disability forum.
Except activists might not know what you're asking. And I don't know if anyone outside your little block of academia will either. So you might have trouble getting disabled people talking about the things. Is that maybe what the cycle of ableism is about?

See why this doesn't actually fix the access problem? Yeah, having me share my interpretation or attempt at it really just reveals how fail your “solution” is. Because it being written so that I can't actually interpret it is the exact problem.

Now for anyone who wants to help make this issue hard to ignore, good stuff to share (beyond this post, I mean):
Tweets in this conversation, this conversation, this conversation 

I think sending submissions about how their call excludes disabled people fits under the who is missing thing, so you can also do that.

And I made a standard-ish intro to go with the link to my original post, if you want to put it wherever else:

"The Feminist Wire shared a call for submissions about disability, saying it wanted to include activists. It's not a call that a disabled activist could reasonably be expected to understand, and the revision is, if anything, worse. Please, contact them/share however possible. [ More details+methods in the post.]"

Wednesday, August 28, 2013

See You and a Social Media Crisis

Trigger Warning: I'm going to go with ablesplaining and lack of access, plus trying to fix access failures by asking disabled people to do the exact thing they just said they can't do.

So, today I leave for China. That's a thing that's happening. And then I will be in China. I know I've been publishing daily or pretty much daily [I've messed up a couple times, including this past Sunday] for a while now, but while I'm in China? Yeah, I'm not counting on it. I can promise that there will be they kind of essay-ish thing I figure most of you are here for on Mondays still, and something on Wednesdays/Fridays. That something may or may not be in English, but it will be a something. That doesn't mean I won't have updates on other days- it just means I make no promises.
Also, I got interviewed. I didn't read all that much of the blog of the person who interviewed me [yeah, I know, I probably should have, and admitting that I didn't is probably a social mistake] but the questions seemed cool and I may have suggested a couple awesome (ausome) blogs to folks who might not otherwise know about them. The interview is here, or it will be as of 9am EST on August 29, 2013. Before then, haha it's not up yet. Told folks they should totally be looking at Radical Neurodivergence Speaking, Ballastexistenz, and Non-Speaking Autistic Speaking. [That's Neurodivegent K, whose real identity you can totally figure out if you want to, Amanda Baggs, who admits to who she is and is more well known than she wanted to be, and Amy Sequenzia, who decided to stick links to all her writing in one place because she writes a bunch of places.]
I'm writing (well, finishing writing) an essay about the erasure of Queer Autistic People, which I'm "presenting" at INSPIRe. [No, their call for papers was not actually accessible to me, but I could catch enough words out of it that I could guess that my paper would fit and it got accepted. So... there's that.] I'm also submitting it to Criptiques,  which had a call for submissions I pretty much understood. Not one I had a lot of warning for, which is why I'm submitting the same thing to it as to the INSPIRe thing.
Then there's this feministwire forum. Um. The initial call for submissions was cognitively inaccessible to me and a bunch of other people. I could tell that a reshuffling of Erasure of Queer Autistic People should fit, but other than that? Uh, yeah, nope. Not accessible. So we asked them to fix it. Their explanation of how they want to fix it? Yeah, not accessible. Neither is the actual revision.
Seriously, look at this. This sentence came from the stuff they added as part of their "so people were telling us we're not accessible and so we revised it" statement.
We are committed to making our forum widely accessible, and we also want to acknowledge and politicize the location from which we ourselves are located and form critical analysis.
I'm an academic. I really, truly, actually am. I have presented at two conferences, been published in one book, and had pieces accepted for another conference and book. I've been on a stand-alone panel. I've got proposals/submissions in the works for two other books. That's what I manage in my first year of trying to be a presentationy academic person. I also have no clue what that sentence means. If a conference-presenting [in disability studies, mind you, which should be relevant enough to make this call make sense to me] academic can't understand you? Even a developmentally disabled academic? You're not accessible. I have trouble believing that you're even trying to be accessible at that point. Whatever claims might be made about including activists and other people who aren't pure academics? That's not actually a thing.
So... inciting as many people as possible to talk about how using language many people don't understand excludes them from the conversation and doesn't actually let non-academics into conversations no matter how allowed or invited they are? Yeah, that's a thing I'd do. I'd even say submit those things once they're written: I was able to piece together enough of their call to say that such an essay fits what they're asking for. #irony there, perhaps? I think so. Translating the call into language you can understand/use is also an idea, for folks who think they can. I don't think either of those things were originally my idea, the translation one definitely wasn't. But inciting people to do it? Yeah I'm trying to earn the title of Social Media Crisis that Neurodivergent K says I may be en route to getting, since this is one of those things that needs a media crisis if they can't fix it themselves.


The Feminist Wire is inviting said crisis. I repeat, they are inviting the social media crisis.
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 got this email about 2 hours before this post was scheduled to go up. They're not rewriting, which is problem, but they kind of just asked for portions of the media crisis to happen, and I'm more than happy to oblige. Who's with me?
Oh, and I sent this back to them:
The problem lies in the fact that I can't. See, I actually am an academic, I presented at the Society for Disability Studies conference and at Debilitating Queerness, and I can't understand it either. I can look at your key words and take a decent guess if a thing I can write fits(ish) or not, but I don't know what you're actually saying either.
And I tweeted at them, one more time. [Not the first time.] If you have Twitter, I'd really like this one retweeted so that they have a harder time ignoring the fact that writing things disabled people don't understand in an invitation to talk about disability while claiming to be inclusive is actually a horrible thing to do.
  thinks having #disabled folk share our ideas of CFP meaning solves inaccessibility. OH WAIT we don't understand -> CAN'T
Retweeting as much of the following conversations as possible is also good.
There is also a Tumblr post.
And for those of you with Facebook, the blog post you're reading right now and/or this linked post are the thing to share. Commenting directly on their share of the call is also nice.
And you can always email them at


Bathroom Talk

Trigger Warning: References to a lot of bodily fluids including menstruation and also loss of privacy

It's a thing. I know it's a thing. Parents of disabled kids seem to really like talking about how their kid is still in diapers at *insert age here* or the constipation or the diarrhea or the fecal smearing or whatever else. And... there's problems with that.
Me? I'm an adult, I'm legally an adult, no guardian, no one's looking into getting me a guardian, there's not much bad that's realistically going to happen if I tell you that in the last week, I had a bathroom mishap. Not much is going to happen if I tell you how annoying it is to wake up in my own blood because I flooded overnight yet again and I HATE MY PERIOD. No one is suggesting I get my uterus removed because of the discomfort of periods, and yes, that is a thing that people do. Go Google the Ashley Treatment if you dare. Not much is going to happen if I tell you that my body awareness is kind of meh and I can't always tell the difference between a big fart and a small poop until it turns out to be one or the other. Not much is going to happen if I tell you that I guessed wrong about that, earlier this week, and cleaning up was kind of a pain. Nothing serious, nothing I couldn't handle myself [another oh so glorious part of my adulthood, cleaning up my own bodily fluids, and the reason I couldn't tell in this case was that it was fluid,] just really annoying. I can tell you that, if I want. Because I am an adult and I can choose to take the risks of whatever consequenses might come and I am only giving you information about me here.
It probably doesn't hurt that most of the people who know me offline will think those are hypothetical. The fact that this blog posts every day and very few of my posts are this personal and it's not all that likely that a potential employer will ever read this particular post and that, oh, wait, I've already got one employer who I could go full time with and be fine if it really came down to it? Part of my risk assessment in deciding I'm willing to share those examples while making a point.
The point? My risk assessment is for what I can share about me. Not about anyone else. Me. Not my kids. [I haven't got any yet.] Me. Not my siblings. Me. Not my parents or my uncles or my aunts or my grandparents or my best friends cousin. Me.
Privacy: It's a thing. If you want to argue that there is nothing shameful about bodily functions? Go for it. Stick to sharing the details of your own functions, not those of anyone else, because we live in a society that says different. There are risks inherent in people knowing those things before they know anything else, or even finding them out later, for things like "still wets the bed at ten or twelve." It's not an appropriate thing to ask someone about. Really isn't. Maybe they don't want to answer but also don't feel comfortable refusing because they've been taught to always answer what an adult asks. Remember: This stuff is considered private, and people are allowed to [really, really should] have boundaries. This is one of those things where you should assume it's out-of-bounds unless someone specifically tells you otherwise.
Yes, there are contexts where it could be important information: your kids doctor should know that. There are even places besides the doctors office where it could be relevant: make sure no one can figure out who you're talking about on parenting forums, seriously. Which means that yeah, you need to be anonymous too, when you go talking about your kid and looking for advice. Because those things can come back to haunt us, and autistic kids grow up to be autistic adults.
I'm sure I really do have more to say on the subject, but this is a word-pile coming out at almost 2am to get it out of my brain because I feel like I can't sleep until it's out. And now it feels like it's out and I'm going to try again at this sleep thing.

Tuesday, August 27, 2013

"Everybody" knows wrong.

Trigger Warning: Erasure, references to ableism and "wiping out" autism

Today, I'm talking about one of the parallels I noticed between manufacturers as described in Democratizing Innovation and organizations that miss/ignore the contributions of activists who are outside their organization. Autism Speaks would be a pretty good example of that kind of organization, FYI. They needed a week of activists yelling at them on their page to give credit to the fact that Google's changes to their search suggestions didn't just happen. Autistic adults, a group they tend not to think about beyond the idea of a crisis and transition, made it happen.
 Manufacturers are often convinced that they developed innovations that were actually developed by lead users, only convinced after being shown the lead user prototypes predating the designs they sell commercially. This comes at least partially from the fact that “everyone” knows user needs are found through market studies and products are designed by manufacturers to meet these needs. Similarly, "everyone" knows that nondisabled caretakers are the advocates for disabled people, and that often means parents. This is the part where I quote Tamora Pierce, in the form of something she had Daine say: "Someday I must read this scholar Everyone. He seems to have written so much- all of it wrong." That shows up in Emperor Mage. It's kind of the problem here: "everyone" knows a thing. "Everyone" knows that user needs are found through market studies and then manufacturers design a thing to meet those needs. "Everyone" knows autistic people are helpless eternal children and someone else needs to make advocacy things happen for us. And "Everyone" is wrong.
"Everyone" knows it. And that has effects. Since “everyone” knows where innovations come from (manufacturers,) manufacturers typically don't track where their innovations actually come from. Or groups like Autism Speaks don't track down how things actually came about. Maybe they even feel like the changes Google made were things that just happened. It's not true, but everyone knows manufacturers do the things or everyone knows autistic adults don't exist/don't do the things, so no one checks to see if maybe someone other than a manufacturer did the thing or if autistic adults did the thing.
Additionally, modifications and improvements made by their own engineers often hide the user-innovator roots of the product. In terms of organizations, that can be things like organizations making additions to the things that other activists (even member activists!) do and then not crediting the initial activists who started the thing. That happens, sometimes. I'd put money on even organizations I like, ones I think of as generally being pretty good, doing that one. How they react when the roots are pointed out matters more to me than them making the mistake or not, in this case, since, well, it's not that hard a mistake to make. But if you insist that it's 100% yours now and/or that the initial contributions of the original activists don't matter? That's when we have a problem.
In reality, nearly 80% of major innovations in scientific instruments that were commercialized actually came from user-innovators, despite manufacturing firm managers being convinced that all the examples were developed within the firms. In reality, Disabled people, Autistic people, make a lot of things happen. It was autistic people who got Easter Seals to write their apology, I'd bet. It was predominantly autistic people in an autistic-run (I KNOW IT WAS AUTISTIC-RUN BECAUSE I RAN THE FLASH BLOG AND KNOW THE PERSON WHO TALKED TO THE MEDIA) effort to get Google to at least not suggest hate speech searches. [The results of the searches were not changed. This is not preventing people from accessing articles, it is simply making it so that you actually have to type out the hate speech yourself if you want to search hate speech.] It was disabled people who made the ADA happen. It was autistic people who dealt with the bus ads talking about wiping out autism. The people who use things every day, who know their disability in and out because they live it, who are out in the community or out in the world living? Yeah, we actually do a lot of things. It's not all big organizations or big manufacturers, but the "wisdom" that it is? It hides the times when it's not.

P.S. Today is my birthday and also I'm heading off to a pre-departure orientation for study abroad. 

Monday, August 26, 2013

Queer Autistic Voice

I wrote a paper for the INSPIRe Virtual Symposium: The Erasure of Queer Autistic People. Initially I'd started writing it for Debilitating Queerness, where I presented it as a work in progress, and some of my thoughts from it came up again at the Society for Disability Studies conference, but INSPIRe is the one I'm actually finishing for. [I'm also submitting it to Criptiques, since I think it's relevant. Given that they're "exploring themes of identity, sexuality, disability/crip culture, and ableism" (Wood) I suspect they will find a disability/sexuality identity-based writing decision interesting.]
I'm breaking some of the rules of academic writing in it. Academic authors are expected to write in a certain distanced tone. It's very different from how I write on my blog- "I" statements are pretty rare, and there's this idea that the author is distant and impartial. I'm keeping academic formatting and academic citations, but this note (a word or two might change between now and then, but basically this note) will be at the top, explaining the "rules" I break.
Writing this, I realized: Why do I feel the need, writing academically, to distance myself from my identities? Why is this expected in academia? So I won't do so. I say “we,” not “they” for groups I am a member of. I will not the feign distanced impartiality of an outside observer: it would be erasing my own Queer Autistic voice to do so.
Why do I feel this need, writing academically, that I don't feel here on my blog, even on blog posts that cite things in academic fashion? In disability rights, disclosing relationships to disability is expected, while in disability studies, it is skirted around (O'Toole 2013) and perhaps it is that my blog fits more into disability rights than my more academic work getting submitted to INSPIRe does? Is the desire to cling to an academically neutral stance and the (perhaps incorrect) assumption people make that this is necessary to be taken seriously in the academy (O'Toole 2013) part of the story?
O'Toole suggests that we publicly identify our relationships to disability, but for that, my note at the top could simply say, "The author is Disabled." Since the paper is about the intersection of Queerness and Autism, it would perhaps be better to say, "The author is a Queer Autistic person." That's not what I did.
I decided to change pronouns from the distanced academic they/theirs/them to the personal we/ours/us every time I am a member of the group being referred to, reminding readers consistently that I am not neutral; I am one of the Queer Autistic people whose erasure I write about. I tell them that to do otherwise would erase a Queer Autistic voice: mine.
I may make it "identity and voice" rather than just "voice." I'm not sure. But voice is important. It has to stay. "If no one ever acknowledges that we have a voice, we can forget how to use it. We might even decide not to" (Bascom 9.) That is why voice is important- if my voice is not used, it is all to easy to erase me from my own stories, and if no one admits we have voices, we might not use them. I have a voice. I will use it to tell my story, and I will use it to make sure the stories of those like me are heard.

Works Cited
Bascom, Julia. "Foreward." Foreword. Loud Hands: Autistic People, Speaking. Washington, DC: Autistic, 2012. 6-11. Print.
O'Toole, Corbett J. "Disclosing Our Relationships to Disabilities: An Invitation for Disability Studies Scholars." Disability Studies Quarterly 33.2 (2013). Web. 23 Aug. 2013.
Wood, Caitlin. "Criptiques." Kickstarter. Kickstarter, Inc., 13 Aug. 2013. Web. 23 Aug. 2013.

Saturday, August 24, 2013

Preparation For China

This is a post about getting ready for China, and educational systems. In this case, it's higher education, though college is doing much better than high school or middle school ever did. [That doesn't mean they are perfect, just that they are better.]
I'm in the Flagship program, which means I have a Capstone year, which means I spend an academic year in China. The first semester I take classes, both morning Chinese language classes and one or two direct enrollment classes. The second semester, I continue taking Chinese language classes and I have an internship. If time allows, I can take another direct enrollment course. Direct enrollment means I'm in the classroom with other Chinese students, taking the same classes they do, conducted in Chinese. It's a bit of a parallel to inclusive education, though it's not a matter of special education or disability. It's a matter of language skill that most exchange students from the USA to China are in separate classes, but it's hard to get the language skill needed to take the classes without actually doing it. So we jump in a bit unprepared- it's not as if we've been doing it the whole way from elementary school or speaking the language at home like our classmates have.
I'm aiming to take Graph Theory, or 图论, and some engineering class. I don't know what the engineering class will be because Tianjin Normal University doesn't actually have engineering and I will have to go elsewhere in town. My professors are looking, and I think they will find it, but it's frustrating to know that once again, what I need doesn't actually exist at the place I am, and I will have to do extra work just to get into the classes I need. [This happened in high school, my senior year, too. I wound up taking online math classes through Stanford in order to graduate, and I took the final exams for those classes in my high school's office. That was an issue of being advanced, though, not of the program failing to exist where I was.]
The not having engineering is the thing I'm talking about. The program I belong in? Doesn't really exist where I am. But. My college is behind me, and they are actually doing a lot of the extra work involved in finding it for me anyways, wherever it is. Tianjin is a big enough city, and there are enough other universities there that they've already found some options. That's the key. They're putting in the effort to find what I need. It's summer, and my advisers are getting back to me about things within a couple hours on weekends to make everything work. I care a lot more about the fact that they're putting in the work, listening to what I say I need and trying to make it happen, than I do about the fact that it didn't initially exist. They're assuming I know what I need, and they're listening and making it happen. That's the general wide-sweeping picture of what inclusion and accommodation should belooking like in college; it's just applying it to a different person in a presumably different situation.

Friday, August 23, 2013

Totally Cynical About School

Warnings: School fails, fairly major.

I'm pretty cynical about things going wrong at school. Not “you don't belong in the classroom” kinds of wrong, like many of my disabled [metaphorical] siblings, but a “these classes you have to take both of are at the same time” kind of wrong or a “this... doesn't exist” kind of wrong. That's because those are the kinds of wrong I've had happen to me, and often. In seventh grade, I couldn't get an appropriate math class [I'm going to be kind of stereotypical here] because I really belonged in probably geometry or algebra 2, but they wouldn't let me out of prealgebra since they wanted me to learn organization. [I didn't learn organization by sitting in prealgebra and not paying attention, FYI.] Also, neither of those classes existed at the middle school.
In eighth grade, they had this test that could be administered at the start and end of the year to figure out progress in algebra 1. Well, I apparently got a score on the pre-test administration of it that would be considered really good for the post-test administration. So when my mother called the school to try yet again to get me a reasonable math class for me, the teacher had been considering calling my mother for the same reason. I didn't take algebra 1. I sat in the back and self-studied, and I wound up taking the midyear and final exams for 9th grade geometry with two other girls, one of whom was in the back self-studying next to me. The other was in a different section, and I think she took algebra 1 for the review. It was great, that first taste of getting an unusual need accommodated. [Remember, folks, the kid you think of as the gifted kid has unusual needs that require accommodation, and may be disabled in addition to academically gifted. The two can go together, and yes, that does sometimes mean disability accommodations for grade-skipped kids or within individual extra assignments.]
I also tested out of Algebra 2, though the other girls didn't. So in ninth grade, I took precalculus. High school lunches were by grade: freshmen ate together, sophomores ate together, juniors ate together, and seniors ate together. There were a few exceptions, like lab classes, gym, and some mixed classes, but people generally ate with their own grade. I didn't. There was a six-day cycle, and I got to eat with my own grade two of those six days. Unless something went wrong, which sometimes happened. I had more full weeks of never getting to eat with my own year than I did times that I got to eat with them even two days in a row- I do have some idea what lunch separation can be like, because of that. The kids who were in special education classes tended to eat all at one table, and I often wound up at their table.
Then I managed to get kicked out of a class I wasn't even really in. It's complicated. Chinese 2 and Chinese 3 were in the same classroom at the same time, and I was supposed to be in Chinese 2. I did the work for both, had been doing so all year, but in April the head of the foreign language department decided I couldn't anymore. This was suspiciously close in timing to my pulling out of the exchange program to Xi'an on the basis of inability to accommodate a shellfish allergy, and also I melted down in front of the teacher when she told me. #awkward. The fact that I wasn't diagnosed, didn't have an IEP, probably saved my hide that day. [That was another of those times where I was pretty blatant about the fact that I was going to do whatI wanted. My guidance counselor said “You might not be back in Chinese 3 tomorrow.” I said “That's fine, we don't meet tomorrow. But the day after tomorrow is a test for Chinese 3, and I'd prefer to take it with permission.” I think she got the implication that I was going to find a way to take it either way.] The principal showed up in my last period class the next day with a blank copy of the classwork and homework from the day I missed. The total effect of being kicked out of a class I wasn't even in was to wind up with both Chinese classes on my transcript and one day of Chinese 2 work never getting done.
Tenth grade went pretty smoothly.
Eleventh grade less so. I was signed up for American Studies, having gotten it in the lottery, and everything looked OK until AP Statistics fell out of my schedule. Still not 100% sure what went wrong, but at the end of it I had AP Physics instead of AP Statistics, American Studies got lost to separated History and English, and I was in a sophomore section of Chemistry instead if a junior one. Physics was fine, but the rest was a mess. I also had two schedule changes in the first week of school, one to try to fix some of the problems and the next when it turned out that the fix gave one teacher 101 students, which the rules said he couldn't do. The rest of the scheduling chaos had been handled the previous spring, including the AP Physics teacher being fairly sure I didn't belong in his class because people aren't supposed to take AP Physics C without Honors Physics 2 first or something like that.
Senior year was possibly the most frustrating schedule to make happen, though once it was in place it was the best one I ever had. AP Statistics fell out again, which is how I wound up taking classes independently online, but the online classes were better for me anyways. My guidance counselor tried to drop me from the wrong electives based on thinking that the ones she wanted me in were more appropriate for me, which led to several visits before school started, culminating in the suggestion that she make my schedule match where I would be... I'm still not sure why she liked me, after all the trouble I put her through, but she did. Which probably also helped in terms of getting away with that kind of thing.
Oh, and the paperwork to make my online classes count for my third year of math so I could graduate? Didn't get turned in until about two weeks before graduation, though I got enough done to qualify as an acceptable year of math in the first semester.
Perhaps you can tell why I'm a wee bit mistrustful of schools to not mess up my schedules and graduation? That's why I came into college already knowing how to line up my classes for all five years such that I'd manage even if I brought no credits back from abroad.

Thursday, August 22, 2013

Artificial Social Expectations (and Lack Thereof!)

Lynne Soraya tweeted, asking for links to posts about the effects of artificial socialization requirements. That was meant for the workplace stuff, I think, and I've been lucky. My work at the Art of Problem Solving (my bosses do know I'm Autistic, though it's yet to be relevant to actual work stuff, just side conversation stuff) doesn't have that. I said I could talk about how the lack of that helped me, and she said she'd like to see it, so now I'm writing it.
I've met one of my bosses in person, once, before he was my boss. That's Richard Rusczyk, who talked at a math meet I was at, and then got recruitment emails sent to all the seniors who were at it. (I mean high school seniors.) I haven't met any of the other administrators in person, and I doubt I ever will. It's one of those much-worried-about online jobs, but it's legit. I would know: I've been working for them for 3 years now, and I get paid exactly what they said I'd get paid. Which is a reasonable amount for the hours, unlike the scams that offer unreasonably high pay to lure you in.
The main reason it's so awesome for me? I don't have to talk to people. I need to type to answer the questions the students ask or to grade their homework, but that's not talking. It takes up very little, if any, of my social energy. I can talk to the teacher (I'm a classroom assistant) if I want to and they want to and we both have time, but I don't need to do that to keep my job or anything. There are no repercussions for just logging in, answering student questions, and not interacting with anyone else. Unless there are actual questions (that I need to ask, I mean,) I might not even need to talk to the teacher. I usually do chat with them, but I don't need to. There's no artificial social requirement. None.
That is so important. Because sometimes, yes, I can be social. I really can. I've gone out for dinner and frozen yogurt (I prefer ice cream, but frozen yogurt is what I can get on campus) with friends while non-speaking, because my social desires and my ability to make spoken language work don't always coincide. I've also gone home when I'm just done, no matter how much I and my friends were looking forward to the thing. Like some other Autistic people, that's a kind of flexibility that I need.
It's the kind of flexibility that you don't get when it's expected that you'll go play golf with the boys, which is the example that Lynne gave, or when going out and drinking with your coworkers is basically expected (Hi, China, this part is going to suck, isn't it?)
When it's expected that I'm going to have the energy for a certain kind of social at a certain time, things can go wrong. When it's expected that I will be social at some point in some way that I can do, it goes fine. Those are very different expectations, and keeping it to the second one? Yeah, that should be considered a reasonable accommodation under the ADA. Not that it would help me in China, since ADA is American's with Disabilities Act, but it should be.

Wednesday, August 21, 2013

Sometimes We Know.

This was my other contribution to #DearMentalHealthProfessionals.
#dearmentalhealthprofessionals Sometimes we actually have a pretty good idea of what is up with our brains. Because we live in them and all.
This is along the same lines as us not being incompetent just because we have mental health issues. Lived experiences matter. Paper qualifications might be good for an average, but that doesn't mean it trumps an individual with individual experiences.
Now, how does this relate to actually doing a thing?
Well, I've already said how well-researched self-diagnosis (not the same thing as going "I'm so bipolar lol," by the way, though a person who really is bipolar or autistic or whatever else may make jokes about it) can be valid.  If it can be valid (it can,) then maybe "I really think X might be what's up with my brain" is a thing mental health professionals should be taking seriously (they should.) Is there room for error? Sure, there's always room for error. Professionals can be wrong, why would I say individuals can't?
Rather than saying the individuals couldn't possibly know and being determined to prove them wrong, why not ask? Ask why they think they have/are neurology X? Why do they think they might be autistic? Why do they think they might be bipolar, or depressed, or have anxiety? Listen to those answers. If any of the reasons they give are relevant to the thing they think they have, look into it. Really look into it. If it seems like a not-quite-fit, look into the things that often get mistaken for what they think they have. Look into things that have their reasons in common with what they think they have. Even if we don't know the exact thing that is up with our brains, if we think we have an idea, it's going to have some good information in it. Use it.
The fact that a professional was willing to look at what I thought was up? That's why I have a paper diagnosis today. I already knew what was up. But I know how people react to self-diagnosis, often, and I had an opportunity where if the professional was willing to listen, I might be able to get a paper one. She did. And funnily enough, I was right about what was up with my brain.
Because sometimes we actually have a pretty good idea of what is up with our brains. Because we live in them and all.

Tuesday, August 20, 2013

Liveblogging the Anonymous Newtown Autistic

Trigger Warning: Murder of disabled people, ableism

Today I respond to An Anonymous Newtown Autistic. A lot of their writing is hard for me to parse (conflicting access needs, perhaps, in terms of them needing to use the more academic terminology because it's the words they know and my brain bouncing off that same terminology unless I am at full energy, despite my ability to use [some of] it at need?) So heads up that while what I am sure of what my current opinions are, I'm not sure they're saying what I think they're saying.
My brain does bounce off their title: The Situation and The Cultural-EpistemicBreak in Neurodiversity: Sarte/Camus, Debord/Foucault, and ASAN. Situation and ASAN make sense, and I assume a cultural-epistemic break is some sort of divide, but that's about what I can get.
The second sentence, spread over multiple lines using line breaks, has enough glossary-type parentheticals that I can manage it, though it takes me some time to figure out. I'm OK with it taking time.
The distinction is between looking at history and making assumptions about it based on political goals or based on cultural shifts, I think.
I don't know if policy people really do outnumber culture people- I think that “PARENTS! STOP MAKING EXCUSES FOR PEOPLE WHO MURDER THEIR KIDS!” is a push for a cultural shift, and pretty much every neurodiversity activist I know says something along those lines. I think most of us do some of both, though how much of each we do varies individually. ASAN, the organization, is definitely focused on policy stuff, though the first publication out of their press, Loud Hands: Autistic People Speaking, is quite clearly cultural. [The college handbook is harder to classify, and their latest publication seems like a how-to guide for the political direction from what I've heard. I'll know soon, since I seem to be getting a copy thanks to having been at Autism Campus Inclusion.]
I really hope the writer has some academicy definition of absurdity, because otherwise “the absurdity of short-term political battles” is a really icky thing to say. It's not absurd in the sense that most people use the word, and their statement about it being important just a sentence before suggests they don't think so either. So I'm not sure what they mean, and I'm pretty sure it's not the only meaning of the word that I know.
The description of Camus and Sarte goes right over my head. See "possibly conflicting access needs."
This paragraph I understand:
The debate above is really about how to negotiate political opportunity. Legislative activism uses political opportunity to better current conditions, this is important, but if we get too locked into our historical "situation" we'll forget that it functions as a moment for a more permanent change in thinking.
I think the idea is that legislation is an opportunity to make legal requirements of what people have to do, but that we can't ignore the context of culture because we need to change how people think, too. It's true. Without changes in how people think, there are risks of people undoing the policy changes over time- I think that may be part of what is happening in the arena of reproductive rights. Where those rights are under the worst direct attacks, people seem to have ideas of women [the people making these attacks generally do not understand, do not want to understand, the idea that a transman could become pregnant or that a transwoman can't or that some nonbinary people can, or really the idea that such people exist, so they don't think about them as anything but horrible] belong in the home having and raising children, and should be punished for enjoying sex. Since the sexist thought is still there, people are trying to undo the policy changes that gave greater choices. It's the same issue where places not bound by the ADA are rarely accessible, and even those who are bound often do not do the work required to become accessible, seeking some sort of exemption.
Policy is not difficult to alter.
Compared to what? Oftentimes, it requires changing people's thought, first. Not everybody's thinking, but certain people. People with power.
Western thought is much more difficult to change and requires more effort from more of us, but with Camus, I hold that political history does not always have to take precedence but can sometimes fall to the wayside as we do the work of scholars to change the ideas that motivate other thinkers.
Western thought is not a monolith. It can't be, if all the people referenced are Western thinkers. Dividing the world into East and West [and where is Africa, might I ask? Where is Australia? Indiginous people for the Americas fit where, exactly? And are we remembering that none of those groups or places are monoliths either, though there will likely be some common assumptions] isn't going to work any better than dividing autistic people into high and low functioning, for example. People are complicated.
I don't think political stuff needs to take precedence, but I also do not think it should fall to the wayside. I think that we need to pay attention to politics, and to culture, and to the ways the two interact. Having different people focusing on different things, though, that is more than reasonable. That's important. No one person can be expected to do all the things. [Practical application: I can't do all jargon. I can only do some jargon.]
It looks like I might want to read Foucault, actually, or at least a translation using comparatively simple language.
They argue that it is in acedeme where we will make our changes, and it will be- already is- an important place. But it's not in academe alone where it will happen- too many people avoid the academy, and too much of this country is anti-intellectual. (Remember how people talked about Obama doing super-well in Harvard Law like it was a bad thing?) But academia will be important, because schools are part of what needs changing to reach equality, and schools are run by members of the academy.
It's complicated, as always, and we need multiple kinds of people, as always. Funny how diversity is what we need to make activist movements work, isn't it?

Monday, August 19, 2013

The Point of Hillary and Rose

I wrote introductions of two 20-year old Autistic people, Hillary and Rose. Before reading this post, I suggest you read those.

I wanted you to think about these two people.
Remember what you thought?

They're the same person. They're both me. I just selectively decided on different bits of my life to give you in each. The book I'm already in is Loud Hands: Autistic People Speaking, and the piece in it is "I Hid." The single-author book is one on Neurodiversity and Tamora Pierce. The piece that's going into another book is sort of an introduction to the Neurodiversity and Tamora Pierce one, and it's going into FYTortall's book.
I chew on my hands sometimes. I really do. I don't chew hard enough to actually hurt myself, but yeah. Chewing on my hands is a thing I do. My teachers have had pretty varied reactions to my inability to sit still. (I'd fail special needs kindergarten, not even joking.) I've had people completely fail to care, and that's been great. Those are the classes where you'd see me sewing or making chainmail or knitting in class, and I'd be doing really well. Those were the classes I was most likely to get an A in. Not because it was easy and I didn't need to pay attention: because that's what I need to do in order to pay attention. This was AP chemistry. This was AP biology. This was Honors economics in college. I've also had people try to stop me from fidgeting. Those were the classes I didn't do so great in. Often "easier" classes- Hebrew school, middle school unleveled science classes, middle school history classes.
That's the thing. People have mixes of traits. When I taught an autism 101 class at MIT's Splash, I had short, 1 paragraph bios of people and the students were supposed to guess if the people were autistic or not. People guessed that Amy Sequenzia was not autistic. It's possible to manipulate the picture that much. Which was among the points I was trying to make.
So, do you really trust the people who use functioning levels as a reason a person should be ignored?

Note: This is apparently my 500th post. WOOT.

Sunday, August 18, 2013

Answering Questions

Trigger Warning: References to murder of people with disabilities, presumptions of incompetence

The questions are in a comment on Mama Be Good.
What Does The Neurodiversity Movement Want?

And the Sue Rubins, Tracy Threshers, Larry Bissonetes...are they the exception rather than the rule? Since Tracy and Larry still use FC, does that diminish what they say?I studied under Doug Biklen and others at Syracuse University, but still could not believe that inside each and every person with autism was an 'intact brain' that could read and write.
So do the neurodiveristy people want those of us who are educators to leave the very impaired young people alone, to 'be' who they are, and support their very substantial needs?
So that leave me as an educator and therapist confused about what to do in my role in the schools.... reduce stimming? Support stimming?
(This isn't the whole comment. I just pulled questions out, mostly.)

Without people actually presuming competence and trying to teach everybody, you'll never get an answer. The results of folks actually trying this stuff suggests that they are actually the rule, not the exception, but if you act like it's an exception and don't try they're going to look like an exception. (No one needed to try to do what I did, because they couldn't.)
There are some people who can't use language. Amanda Baggs has written about them some. She's actually one of the people where I'd suggest reading her whole blog, even though I haven't finished doing so yet myself.
There are people FC doesn't work for, because they don't use language. (I think Amanda talked about that on her Tumblr, not her Wordpress.) They aren't having great successes with it, though. Because they don't use language. This is a thing that exists. It's not the same as not speaking, and it's not the same as not being able to start typing independently straight off, and it's definitely not the same thing as non-speaking, trained cat to facilitate typing at need, so without trying, it's not safe to assume that it won't work, that the person can't learn to type. (If you can control what a person types by putting your hand on the small of their back, please, do tell- this is not a thing that makes half as much sense as "the person can type and has movement issues" but it's a thing that some people like to say sometimes.)
So, no, not every autistic person can learn to read and write because of the whole not everyone uses language thing that Amanda likes to point out, but trying to see if they can? Kind of important. Trying all the ways? Kind of important.
I can't speak for every neurodiversity activist, but these are some guesses I can make. I am a neurodiversity activist and I want these things, and I know other neurodiversity activists wanting those things too, generally. Assume that I have left out a bunch of stuff, though I think that "want people to be accepted as people" should get most of those things to logically follow.
Neurodiversity activists want you to stop making false binaries.
  • Leaving people alone and trying to force them to be normal are not the only choices, and if you've ever raised or taught a weird but presumably NT kid, you already know that. It still applies- there are more than two options.
  • High functioning/low functioning aren't lines you can really draw well, and trying to say who is and isn't OK based on those attempted lines? Not good.
Neurodiversity activists want people to be accepted as people, regardless of what their abilities seem to be and/or turn out to actually be once you try teaching them/seeing them as people. This includes people who don't use language.
Neurodiversity activists want you to realize that advocacy is for everyone, and it doesn't always look like your picture of it. I want you to read Amanda Baggs piece on this in Loud Hands: Autistic People Speaking as well, FYI. I can't link it because I don't remember if/where it can be found online.
Neurodiversity activists want to be a part of the broader disability rights movement. We think getting excluded from a disability rights movement because of our disabilities is pretty ironic, FYI.
Neurodiversity activists want people to quit using evolution arguments in eugenicist ways. I'm going to put on my scientist hat and say that those people are doing science wrong. Evolution isn't stepwise, so calling autism the next step in human evolution is just silly. Diversity is a thing that nature has been "willing" to pay a pretty high price for, since environments change and therefore the most advantageous traits to have will change- and so will the most advantageous ratios of different kinds of traits, since having one species that does all the things isn't actually how this works. Ecosystems have niches, filled by different species that do different things. Human societies have niches too, best filled by different people with different things they can do. And when times change, the different kinds of niches change in number. Keeping as many traits around as possible is evolutionarily advantageous, and yes, that means heritable disabilities, and yes, that means heritable mental differences. I should not need to explain the exact use of every single possible difference because neither I nor anyone else can be reasonably expected to know all of those answers.
Neurodiversity activists want you to realize that a person's education does not require that they be "table-ready." Sometimes, it depends on remaining table-unready: mine continues to. [That's a big loud NO to suppress stimming. Go ahead and help a student find substitute stims, working with them on this, not saying which ones must work or anything, should there be one or two that really do cause problems in the classroom, but also be accepting of the fact that the substitute stim will probably look weird too, and of the fact that sometimes they really are just going to need to step out/to the back for that stim.]
And what might be the biggest thing of all:
Neurodiversity activists want you to quit murdering us, and to quit calling it mercy or making excuses for other folks who do it.
What Does The Neurodiversity Movement Want?
What Does The Neurodiversity Movement Want?

Saturday, August 17, 2013

Review: Democratizing Innovation

I read this book called Democratizing Innovation, by Eric von Hippel. Eric makes the pdf available for free on his website, so yes, this is a book I got for free. You can get it for free too. And I do suggest it for people who are interested in innovation, technology, engineering, and maybe even politics. Plus it's got a free translation into Chinese, so I can use the two together to learn better Chinese.
Reading it made me think about a lot of things: I think there are parallels between hacker culture (what most non-computer-nerds think of when they hear the word hacker is actually a cracker,) and anarchism, which is interesting. It's not the thing I know most about, since my experience with anarchsim basically extends to reacting to a couple Slingshot articles and I'm not actually an anarchist, but the book made me think of that parallel. That's why I think it could be interesting for someone who is into politics, especially anarchist politics.
It also made me think about possible parallels between user-innovators and scholar-activists, since both wind up creating things that they need and don't have. Scholar-activists come up with the words they need to describe things they run into in activism, sometimes. User-innovators come up with the inventions they need. It's similar. So an activist (especially a scholar-activist!) could find this book interesting.
I read a bit where manufacturers (incorrect) conventional wisdom caused them to not realize how many of their major innovations actually came from user-innovators, who are apparently invisible to them. It reminded me a bit of how it sometimes seems like big organizations don't notice the individuals who actually made things happen. (Hi Autism Speaks, I am looking at you right now.)
That's on top of the interest to people who are interested in innovation or engineering or technology, the topics this book is actually supposed to be about. It really is about those things, and it does a good job looking at what sorts of innovations come from which places and why. The effect of the internet is also looked at, including how people are using the internet to spread their own innovations and how Firefox is basically a pile of user innovations stuck together, same as most open source projects.
Besides this, there was examination of who makes these innovations. It seems to be the early adopters and people who are in similar but more advanced areas who make innovations, so the first people to get a car were innovators and the racecar drivers are innovators. It's actually really cool!
It even took the time for economic implications of widespread user innovation. Manufacturers would need to adjust, but overall social welfare can be increased with more user-innovators. 
Democratizing Innovation also has a good bibliography, from which I noted several pieces I am interested in reading. That's these:

Amabile, T. M. 1996. Creativity in Context. Westview.
Antelmon, Kristin. 2004. “Do Open Access Articles Have a Greater Research Impact?” College and Research Libraries 65, no 5: 372-382
Christensen, C. M. 1997. The Innovator's Dilemma. Harvard Business School Press.
Morris, A. D. and C. McClurg, eds. 1992. Frontiers in Social Movement Theory. Yale University Press.
Harhoff, D., J. Henkel, and E. von Hippel. 2003. Profiting from Voluntary Information Spillovers: How Users Benefit by Freely Revealing Their Innovations.” Research Policy. 35, no 10: 1753-1769.
Mishina, K. 1989. Essays on Technological Evolution. PhD Thesis, Harvard University.
Von Hippel, E. 1976. The Dominant Role of Users in the Scientific Instrument Innovation Process. Research Policy 5, no 3: 212-39

This is by no means the whole bibliography; it's just the items from it I think I want to read.

Friday, August 16, 2013

Strangely "More Severe"

This may be the silliest reason to assume a person "more severe" that I have heard yet. Possibly. When "nonspeaking" is used, it's at least referring to an actual autistic trait, and it's one where "nonspeaking" is having that one trait to a greater extent than "selectively mute" is. Most of the ones I see are like that: It's assuming that one specific trait is a reasonable judge of overall severity, which is patently ridiculous, but there is at least an autistic trait in the reasoning somewhere. Or there's a trait of some other disability that the person also has, which isn't autism but it's still based on a disability. That doesn't make these reasons any more accurate, but I can at least see where they come from.
This one, not so much.
Lydia Brown (Autistic Hoya) and I know each other offline. We've known each other for longer than I've been involved with disability stuff, and significantly so. We met at MIT's Splash program in *insert year here, I think Lydia knows.* I don't remember the exact details of how it went, but either she informed me I was autistic or asked me if was aware that I was autistic. I was in one of my "in denial" times, so of course I was not going with "yeah I'm super-duper autistic!"
Anyways, Lydia either tells me or asks me if I'm already aware, then (nonphysically, nonliterally) drags me to lunch with her.
I told someone this story of how I met Lydia. They said, "So, she's more severe than you?"
I don't even know how they got to that conclusion. I said something along the lines of, "There's not really a more severe/less severe strict scale, there's a pile of different traits that come in varying levels and the level of impairment that the traits cause aren't always directly related to the extent that the traits are there and is super-situational. There's often more/less obviously autistic, and there's more/less support needs for any given environment, and sometimes you can come up with an overall more support needs between two people but not always and I'm pretty sure Lydia and I are not a pair where you could do that."
Because yeah, Amy Sequenzia has overall more support needs than I do, for example. So do most five year olds, because, well, they're five. But... coming up with an overall more support needs between Lydia and me? Super-duper situational. I'm going to go with she's better at public speaking, and I'm more able to go to concerts, and we're similarly disorganized due to EF issues though I've had more time to learn to get stuff done anyways without all-nighters thanks to various situational stuff including being a year older.
But that's not really the point, is it? The point is that "This person went up to another person and informed them they were autistic pretty much out of the blue" isn't actually a statement of severity. It requires that the person doing so have some sense of how to tell if another person is autistic or not, and it requires that the autistic person they're finding show at least some traits. You could actually imply that it means I'm more severe if you really wanted to, because I have to be obvious enough for her to notice. But that doesn't actually make sense either because it's different traits that are required for different things going on here.
And I thought it was funny that someone would conclude Lydia was "more severe" based on her being the first not-me person to tell me I'm autistic. That's the big reason I'm writing this, really.
And yes, Lydia said I could write this and use her name/link to her. She also laughed a lot because it is silly.
Also, I've written more serious stuff about functioning labels being fail before, and so have other people. More times than I can link to.

Thursday, August 15, 2013

How Does This Look In College?

At NCIE, I saw a lot about AAC (Augmentative and Alternative Communication.) I'm on a Neurodiversity Committee at my college. One of the things I told my committee (It really is mine: I'm not officially in charge, but no one really argues with me. They sometimes are a bit "OK, how do we do that?" but that's about as much as I get) was that it's not just autistic people who are specifically Aspergers going to college. It's not just people who get called "high functioning" going to college. (Functioning labels are made of fail anyways. Getting into specific support needs, though, is super-useful because it lets people get what help they need.) There are going to be nonspeaking Autistic people with significant support needs wanting to go to typical 4-year programs and access the general curriculum. It's estimated that 20 or fewer nonspeaking autistic people have earned college degrees to date (but that's not zero!) and there will be more. DJ is at Oberlin now, and Carly Fleischmann is about to go to University of Toronto this fall.

So at one of the presentations, when we were talking about inclusive classrooms, I asked what this would look like in college. The presenter actually gave me a link, which is great. There's just one problem: very little of it has anything to do with answering what inclusion looks like in the same sense it should be happening in elementary classrooms, just moved up to college. None of it is a full answer.

There were a bunch of programs; I'm just looking at ones that are at universities or colleges or community colleges- things that aren't just for people with intellectual disabilities. (I wasn't asking specifically about intellectual disability, by the way. So... no issues with programs meant mostly for ID as long as the personalization of supports is enough to get developmentally but not intellectually disabled students what they need, but I'm a bit mistrustful of trying to do it that way given the ways it's gone with other services that try to do that.)

They aren't what inclusive classrooms look like in college. TAPESTRY is only 25% of "instructional time" exclusively with other students with intellectual disabilities, which is nice, and it looks like there are some "typical courses for credit" stuff, but... the certificate is separate, and the curriculum isn't one of the main goals. CrossingPoints (University of Alabama) is apparently for people who are still in high school, and doesn't say anything about general curriculum. It's a separate certificate. Stepping Stones actually lists college course access as a goal! That's an improvement. But... 50% of the time in instruction with just other students with intellectual disability? Separate certificate? This is still kind of segregated...

Project Launch includes typical college courses, but it's not inclusive at all. All the time is just with other students with intellectual disabilities. Project FOCUS is inclusive, and it includes access to college courses as what seems to be the number one priority. So the fifth program on the list happening at a college campus is one that's worth looking at for "what does this look like in college?" It's still a separate certificate, though. Which isn't good- separate certificates mean it's a lot harder to get jobs later. (It would make sense to give an associates instead of a bachelors, since this program is typically 2 years and this school is a 4-year one, but associates degrees are things that are generally still offered at 4-year schools.)

Alameda's College to Career program lets students earn a typical 2-year degree, but 50% of the time is with only other students with intellectual disabilities. There seem to be a few locations of this program, too, and it's affordable. So there's some good and some meh. Something in between them and Project Launch might be an answer to what this looks like in college. Carly's experience, once she's there, might be an answer to what this looks like in college. 

Wednesday, August 14, 2013

Meet Two People

I'm introducing two Autistic people to you today. They get psudonyms. I'll call them Rose and Hillary.

Hillary is currently living with her parents. She is sometimes able to speak and sometimes unable to speak, and even when she can speak, typing is often easier. She often carries a blanket with satin binding with which to stim. While she is usually able to look at people, she does not make eye contact. She is completely unable to keep her space organized, so someone else has to keep her organized. She will refuse to eat certain foods, such as prepared eggs and anything which contains mint, and can not be convinced to eat a typical breakfast. She is hypersensitive to many kinds of sound, and does not tolerate flashing lights. When upset or overloaded, she has been known to chew on her hands. In the classroom, she has consistently fidgeted, with varying educator reactions. Several have tried and failed to stop this self-stimulating behavior.

Rose is preparing for a year abroad in China, where she will be taking advanced Chinese language courses along with one or two direct enrollment courses conducted in Chinese. Graph theory is almost certain, and she is attempting to find an appropriate engineering course. She generally does well in school, balancing school life with activist life. She has presented at Debilitating Queerness and the Society for Disability Studies, and her work has been featured in a book. She also has an accepted article in an upcoming book, and is working on a single-author work of her own related to neurodiversity in the works of a specific author. While keeping organized is a challenge, she has learned to get things done anyways, and she has accommodations in place for herself that allow her to accomplish most of what she wants to do. (She's not convinced that neurotypicality would let her get the rest done, either.)

Now. What do you think of Hillary and Rose?
I'll wait. I'd actually really love it if you wrote down what you think of each of them from this, see what kinds of assumptions you made, maybe commented with them.
No, really. I'll wait. You're not finding out the point of this today. :p

Once I reveal the point, this sentence will be a link to the post where I do so.
Well, it's already a link. Because I already wrote it. But it won't go anywhere.

Tuesday, August 13, 2013

Medical Discrimination

Trigger Warning: Medical discrimination, gaslighting, invalidation

This is what I had planned to use for Blogging Against Disablism Day 2013, until I saw the bit about a family keeping their autistic son (naked!) in a cage. So that and similar abuses are what I wound up talking about, because none of this is isolated.
Medical discrimination based on disability. It’s a thing. It’s why Lydia is scared of doctors. It’s how Amanda Baggs was almost allowed to die, was still told to consider the alternatives after it was made clear to all parties that the only alternative to the (standard for her condition) procedure was pneumonia and death. It's why Not Dead Yet is a thing, needs to be a thing.
And people have trouble believing it.
As perhaps you can tell, considering that this is August now and nowhere near the date of BADD, this sat for a while. It's back, from a slightly different angle than originally planned. I'm talking about the ways that doctors miss problems, ignore problems, and discriminate based on psychiatric diagnoses. There's a thing called diagnostic overshadowing. There was a recent New York Times piece, with some statistics and some personal story, and it's a big problem. A person going into the hospital for migraines (it shouldn't get to the point where you need the ER for a migraine if people are giving proper care in the first case, but it happened) was given saline and electrolytes instead of pain meds, despite having been told they were going to get pain meds.
That's on top of the inhumane treatment given at the hands of the system. WHO calls it a human rights issue, by the way.
Yeah, it's ugly. There's a reason that my tweet to the #Dearmentalhealthprofessionals tag is:
#dearmentalhealthprofessionals Your coercive system makes avoiding care a RATIONAL decision for many who could benefit. How will you change?
Because it is. If you knew that you had a mental health issue, and that you might be able to manage on your own, and that if you went into the system you faced real risks of:
  • Losing your right to vote
  • Being involuntarily committed to a mental hospital for some length of time
  • Being lied to about what medication you are given
  • Having every symptom blamed on your mental difference, to the exclusion of physical medical issues
  • Having every social issue you ever have for the rest of your life blamed on your mental difference, regardless of it having anything to do with it
  • Watching and listening to your neurology being used as a cheap insult
  • Being presumed not to know what is in your best interest
Would you go into it? Or would you keep trying to handle it alone, even if it wasn't really working? That's the thing. People talk about folks who don't get care as being irrational or as needing to be made to go for their own good. That's not the issue. The issue is that the system is set up in ways that makes avoiding it a rational decision. It's not a refusal to go in because their mental difference means they don't know what's best for them.
Remember: someone (probably multiple someone's, I didn't read the whole tag) said: "#DearMentalHealthProfessionals I am Not incompetent just because I have mental health issues. Please listen to me." Someone felt the need to say that.
Because people will make just that assumption every time there is a disagreement, on everything from "I'm in pain and need medical treatment" to "I don't think this is the best treatment plan for me." That's why people don't go in.

Monday, August 12, 2013

Response to a Psychic Landscape

Trigger Warning: pathologization, abuse, eugenics, ableist terms as a quoting the terms of the time thing.

Today (the “as I write this” today, not the “when this gets published” today,) I am responding to a piece in Slingshot. Yes, Slingshot is an anarchist publication. No, I don't think I'm an anarchist. Even if I'm not an anarchist, I can still look at anarchist writing with my neurodiversity paradigm eyes and see what thoughts I think. That's what I'm still up to.
Today, it's “Tunneling Beneath the Psychic Landscape of the Street Protest Ritual,” by I Steve. This event called the RNC is coming up a decent bit, and I'm not sure what it is. I'm not sure I need to know what it is, either. I think “insert large protest event here” will work.
They notice the psychology of a bunch of other things are pretty well studied, mentioning business, war, and politics. I'd point out things like social psychology and educational psychology, too. But then the psychological factors are pretty much not studied in activism. Why?
Well, “we see an academic mental health ideology being applied from the top down upon vulnerable people whose experiences are minimalized.” (I'd probably have said minimized. It's shorter and means the same. I go for smaller, simpler words when I can, mostly. It got me in trouble at school sometimes.) But yes. That. That sounds like something the pathology paradigm would do. It sounds like something the pathology paradigm does. The pathology paradigm also gets used at intersections of groups those in power dislike and neurodivergence: in the days of slavery, wanting to run away was considered a mental illness. In the BarCode world, wanting to burn the (actually quite oppressive, with eugenics and all) bar code tattoos gets considered a mental illness. Beat poets (generally the female ones) got locked up in institutions as insane. “Mentally deficient”women were sterilized- women of color, almost always. (Not 100%- sometimes when neurodivergence is the ableist excuse for a horrible racist thing, it will hit a white neurdivergent person. We can't ignore those times because ableism is really real too, but we have to remember that this bit of system only exists at all because of racism.) There's not exactly a short history of activists/anti-authoritarian people being called mentally ill and locked up for it, if they can't be gotten on an actual crime. Anarchists are portrayed as psychopathic and “bent on mindless destruction.” (Those two things aren't the same, and definition of what makes a person a psychopath/sociopath doesn't actually imply evil anyways.) Heck, it gets referenced in 1984, too. Winston is in the Ministry of Love to be “cured” of his “insanity.” (Insanity is socially constructed, just like the alleged normal brain people get privilege from having their brainsset up enough like it.)
The alienation they realize they have from traditional systems, including those of mental health and fitness, makes anarchist community one that might do well with the neurodiversity paradigm. We're not opposed to medication if the person taking it thinks it helps them, or we shouldn't be, but forced medication, forced institutionalization, forced normalization? We don't like those. We think the ways brains are set up vary as part of human diversity, and that privilege and oppression dynamics happen along how close we are (or can act) to the alleged norm.
Even though I'm not actually an anarchist, I think I might use some of my thoughts from this article and some of my thoughts from the shorter piece by Zane Bolonga about anarchism and neurodiversity to write a piece and send it to them. I think the main point of that piece would be: “The neurodiversity movement is here, and even if we're not actually anarchists and you're not actually neurodiversity activists, we've got common interests we can work on. Some people will be in both, and you can help with that by keeping ableism out of your spaces.”