Note For Anyone Writing About Me

Guide to Writing About Me

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

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

Citing My Posts

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

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

Wednesday, July 31, 2013

Basically an ode to Kassiane

Trigger Warning: Sexism, Ableism, Gaslighting (institutional), probably more... 

For Gender and Women's Studies at the end, I had to write a "she-ro" essay (ugh I hate that name it's so corny.) And then I wrote it about Kassiane, aka Neurodivergent K. Who is super-radical. And kind of awesome. And possibly going to be embarrassed because I am gushing, but she said I could put this up so now you all get to see me gush about Kassiane.
Kassiane swears. I don't swear on this blog. (I do on Twitter and Tumblr, but not here.) I censored one letter from swears when I quoted her here, but you can still tell what she said.

Flash back to March 2012. I'm slowly entering online Autistic communities, and George Hodgins has just been murdered. People are calling it mercy and making excuses of his mother having killed him because of problems they didn't even have. I'm angry. I've been taught that anger is bad. It's not something you should broadcast. I don't yet know the extent to which people tame their portrayal of heroes- Martin Luther King Jr. and Ghandi are still people who were nice because they were nonviolent. Kassiane helped change that. I read her reactions: “My people are being slaughtered. Anger and hate is how people are supposed to respond to that(You keep killing us, and I am PISSED.) Then I thought back to A Wizard Alone.
It's not a good thing, not a bad thing, just what's so,” Millman said. “But you might want to think about what result this kind of emotion has produced in the past. Or might produce again in the future.” (Duane.)
I thought back on my own life. When I got angry, I made things happen. It worked. Kassiane's writing got me thinking in ways that led to creating my blog in April 2012- depending on what a person thinks of my activism, she gets a significant portion of either the blame or the credit for my turning activist.
Initially, I “knew” her as a blogger- I read the entirety of Radical Neurodivergence Speaking, and I eventually followed Kassiane on Tumblr. That's how we started talking, initially, and we met in person for a day and a bit in November 2012- our friendship has been almost completely online, via Tumblr, Facebook, Gchat, and reading (sometimes linking back and forth to) each other's Blogspot blogs.
I don't know as much about Kassiane's initial socialization as a small, cute, AFAB person, but I know the intersections she talks (and sometimes blogs) about now: In person, she will often ask: “If I was a foot taller & looked like a dude would this be happening? Ok let's pretend that's the case and move on" (Personal Communication,) though doing so has yet to make a person actuallypretend that's the case and move on.” When she talks, it's always intersectional. She's taken to saying “My activism will be intersectional or it will be bullsh*t.” She also types it. In the emergency room for adrenal failure? Kassiane will still talk about intersectionality- autism on her chart means incompetence gets assumed, and woman means “if I am not actively being mauled by a bear it's not necessarily really a real thing.” (And Then I Land Inthe ER Again...) At Geek Girl Con? Kassiane can tell you what was good: no creeps, so cosplaying is safe. She can point out what was at least better than most: still predominantly white, but there was more racial diversity than most conventions. She can point out the problems: no disabled presenters were mentioned, there were some access issues related to being directionally impaired, some presenters said problematic (sexist or heterosexist) things, and a person who used a wheelchair put strobey things on her wheels (access issue for photosensitive epilepsy.) (Geek Girl Con Reflections: TheGood, the bad, the WTF.) Skeptic communities? “The sexism is awful, and the way you try to blame it on people with my f*cking neurology is not acceptable.” (Skepticism's Ableism Problem.) Kassiane knows intersections because Kassiane lives them: she is Autistic; she is photosensitive epileptic; she has adrenal insufficiency; she is a small AFAB person who gets read as a woman; she is mixed-race. In winter, when I met her, she passed for white: had you put the two of us next to each other and said “One of these women is white and the other is mixed-race,” I think most white people would have pegged me as the mixed-race woman. In summer, she gets dark, and people can tell that she is, in fact, half Asian. That's when the racism comes in. Passing for white for part of the year and being a visible woman of color the other part gives Kassiane a very good perspective on how racism intersects with disability and gender.
I admire Kassiane because she knows how all the systemic patterns affecting her work, and she will call people out on their -isms. I admire Kassiane for the way she thinks: I remember her saying that she carries a wrench because if you pull out a knife someone will get stabbed, but a wrench will confuse people while being effective (I often carry bolt cutters.) I admire Kassiane because she is a walking, talking social media crisis: she chose that term for it because the Autism Speaks person who talked to her when they used her work without permission and got the attribution wrong had “social media crisis” in his title. She now has two shirts she has made to say “Social Media Crisis,” as it is now her title. I admire her because being a social media crisis gets things done. I know it gets things done because I do it too- she says she may need to make me a “Social Media Crisis” shirt, too. My exact method of crisis may not be exactly the same, since I seem to have become the Official Flash Blog Organizer for the Autistic community and she mostly seems to get her posts shared, but the fact remains: I learned a lot of my activism methods from Kassiane.
Works Cited
Duane, Diane. A Wizard Alone. San Diego: Harcourt, 2002. Print.
Sibley, Kassiane. "And Then I Land In the ER Again..." Web log post. Radical Neurodivergence Speaking. 15 Aug. 2011. Web. 26 July 2013.
Sibley, Kassiane. "Geek Girl Con Reflections: The Good, the Bad, theWTF." Web log post. Radical Neurodivergence Speaking. 11 Oct. 2011. Web. 26 July 2013.
Sibley, Kassiane. Personal Communication. 26 July 2013.
Sibley, Kassiane. "Skepticism's Ableism Problem" Web log post. Radical Neurodivergence Speaking. 7 Feb. 2012. Web. 26 July 2013.
Sibley, Kassiane. "You keep killing us, and I am PISSED." Web log post. Radical Neurodivergence Speaking. 13 Mar. 2012. Web. 26 July 2013.

Tuesday, July 30, 2013

On "Treatments" and "Cures."

Trigger Warning: References to eugenics, ABA, quack treatments

So I got interviewed for a thing, and it's a bit on the down low for now, so that's all I'm going to say about it. But one of the questions was what I thought about people who want to treat or cure autism. Well, it really was if I'm offended by the movement to treat or cure autism. I'm more scared of the damage it does with ableism than offended by it. 

There's a lot of things that go under those two banners. Some I think are fine, even helpful and needed- helping us learn skills that we're capable of learning, helping us figure out how to work with the abilities we have, helping us find ways to communicate that work for us. Of course, that communication one tends to go under the banner of "therapy" more than of "treatment," but if Paul Offit felt the need to write about facilitated communication not curing autism (he does that in Autism's False Prophets, where he unfortunately also seems to think it's a hack,) someone probably thought it did. Which, um, what? Even good things, when under the banner of "treatment" or "cure," tend to come with a lot of bad ideas wrapped up in them, bad goals that they think the good things will help make happen.
Some treatments I think are harmful- most ABA goes there, since the goal is usually to make us act less autistic thanks to conflations of less autistic with happier and more able to do things. Anything that conflates those two things is a problem. The fact that it's compliance-based also scares me. Really the only ABA that doesn't scare me is the stuff that people call ABA to get insurance coverage but where if you look at what they're doing and what ABA actually is, you can tell it's nothing of the sort. (Not all the things in ABA are ABA themself. Collecting data, for example? That's part of scientific method, which is a cool thing.)
Conflations worry me me, like when people conflate various medical issues that some autistic people have with autism and then think they're treating autism by treating those medical issues. Like everyone else, autistic people are happier and more functional when we don't have various medical issues bothering us, but that's different from being less autistic. I think this also relates to the conflation of happier/more functional with less autistic.
Some treatment terrifies me. Chelation, MMS, and the like go here. If the thing is dangerous, medically warranted under a very few circumstances that aren't actually autism, or is based on bad science (often all of these at once,) it's safe to say that it goes here. So do people who think that giving anyone a "cure" for autism without their express consent would be acceptable under any circumstances. 
I also tend to be scared of people who think it's possible to “cure” autism, since it's not really a statement that makes sense... we're talking about the entire way a person's brain is wired here. Curing the random other medical issues a lot of us have? Yeah, that makes sense. Autism itself, not so much. (Conflating those two things? Go back two paragraphs, conflations are scary.) Preventing autism usually just means prenatal testing and selective abortion, which also terrifies me. It smells of eugenics, especially since forced sterilizations of disabled people, court-ordered abortions for disabled people, insistence that disabled people can't consent, disabled people having court orders that say they can't have sex (because they can't consent)? Those are all things that happen, and those all look like eugenics too. There's a lot of stuff like that, and a lot of it goes under "cure," "prevent," or "treat." 

Monday, July 29, 2013

I can wheel myself in the hospital

Trigger Warning: hospitals, injuries (again, no -isms involved in the injuries themselves,) menstruation, misogyny (against teenage girls, specifically)

I'm still doing the hospital stories thing. This one is the broken leg that never made it onto my medical record. And yes, I'm sure I broke it. There's still a dent in my shin. Second one here, about a pig bite, first one here about a thing I can't actually spell. You can thank Corbett for this series, and my knee for an unplanned fourth edition to come. (Please don't actually thank my knee. Corbett is cool, though.)
I was at a swim meet. I was that kid where if someone was feeling sick and didn't want to swim their event, I was willing to do it for them. (They had to get permission from a coach first, which didn't happen much.) So there was this one time that a person was trying to get out of the 200 meter individual medley. Apparently very few people want it. The coach said she didn't have to swim it if she could find someone else to, which is how I wound up in it. I was the slowest, as per usual in all my events, but I finished. I then swam the 50 meter freestyle right after.
It was hot. I was tired. It was past my normal bedtime. I was hungry. I was probably dehydrated. Then I got the hiccups. I passed out, and came to in the pool. I hit my leg on the way down, which is how I focally fractured my shin. Except I didn't know I'd done that yet.
I go to the hospital, of course. I brought my homework to try to do in the waiting room. I made some progress, so it wasn't a complete waste.
First thing is at check-in, they try to give me pain meds. (What is it with these people and painkillers? I get needing to offer it at least once every time because they don't know I hate them yet, but "I don't use painkillers" means exactly that and they should accept it the first time I say it.) I tell them I don't use painkillers. They say it's just Motrin. That's great, I still don't use them. I don't recall specifying that it is only prescription painkillers I don't use (Yes, I know, it's also an anti-inflammatory. When they're trying to give it to me because it reduces pain, it's a painkiller.) But I think this is another case of them not being used to stubborn 16 year olds who will challenge them and don't want to medicate everything.
I also rolled my eyes at them several times over the pregnancy test they wanted. (They asked when my most recent period was first, which I answered with "right now." That does seem to be the answer most of the time I wind up needing an X-ray...) It took them forever to actually do the test, too. Like, we're on the way out and they're surprised we're not going to wait for the results. Not that results take long, but no. Time to go home.
And of course, the wheelchair. The wheelchair and my stubbornness with that is the reason Corbett thought this would be a good thing to write about. While I was waiting for the X-ray and they thought I might have a broken leg (I did, but it was a focal fracture and they wound up missing it because those often don't show up on X-rays and you don't exactly expect a person with a broken shin to refuse pain meds or be able to walk so that was that,) they stuck me in a wheelchair. It made sense to do that, and I wasn't arguing. What I did argue with was letting the hospital people push the wheelchair. I actually grabbed the wheels and held them stationary every time they tried, while telling them that I've got it. They kept trying. My eventual tactic was to start wheeling before they got to me and stay a few steps ahead. They were scared I was going to hit something, but for a high school athlete in a sport that uses the arms fairly heavily? A manual wheelchair really isn't that hard to control. Besides, I don't think that's what they were really scared of. Patients are supposed to be quiet and not have autonomy and do whatever they're told, and here I was moving independently and demanding that I continue to do so.
Patients aren't supposed to challenge doctors. Doctors are supposed to be all-knowing. A patient does not have autonomy or independence. A patient is essentially a passive object. That night, I ignored all those things- I challenged them on the pain meds, I challenged them on the wheelchair, I moved around on my own no matter how many times they tried to push the wheelchair for me. I called them out on the idea that a teenage girl who passes out is probably pregnant and lying about her sexual activity out of fear of her parents (I'm gray-ace, for pete's sake, and I don't have a sex drive. Besides, I had my period that night. Isn't a heavy period also a thing that can cause people to pass out? Yeah, I thought so, and mine are. They have been for as long as I've had one.) And no, I did not take the Motrin.

Sunday, July 28, 2013

A Few of My Favorite Things

So the wonderful Corbett has asked me if I had a list of my favorite things anywhere. (I met her at SDS, she's awesome. Also she totally cited me in an academic article. I think that's the first time I've been cited.)
So, I'm a daily blogger and always need more thing to blog. Which means I'm doing it. (BTW, you can ask me questions. I've got an "Ask me things" page in the sidebar, comments enabled and everything, and the Yes, That Too Facebook page takes messages. Also sidebar linked.)
  1. ECHOLALIA. Echolalia is fun. Ladle is like, one of the best echolalia words out there. For real, I love it and it is win. So I like to say "ladle!"
  2. Bacon! I like bacon. I really like bacon. It is yummy, and yes, I have just taken a plate full of bacon instead of going up again and again for my two or three socially acceptable pieces at a time. I don't care. Also, bacon is revenge. Story of why here, long story short an 800lb pig thought I would make a good lunch.
  3. Soft blankets with satin bindings. I stim with the satin bindings, they feel great between my fingers or toes. It's a great way to fidget and to calm down, I even have a jacket made from this sort of blanket that people mistook for pajamas at SDS.
  4. The color purple. Actual color, not the book by that name. It is my favorite color, always has been. 
  5. Singing. I'm a tenor second/baritone, and it is fun. I can sing two notes at once, too, but it doesn't sound awesome. It sounds kind of like a harmonica or a train whistle, the interval was between a minor and major tenth when we tested it about four years ago. I was in tenor bass choir for two years. Yes, my name is Alyssa. Yes, I was assigned female at birth. No, I have never been on hormones. I'm just a tenor second. I don't know either.
  6. Ultimate Frisbee, I've actually talked about it a few times, both with my college team and helping out at the elementary school I went to for a year. It's the only real "team" sport I play. I root for the Boston Whitecaps, in case you were curious.
  7. Computers. There are a few reasons, including internet, AAC usability, writing (I can't read my own handwriting,) and generally tech-geekiness.
  8. Swimming. That's another thing I used to do competitively. I swam whatever I was put in, really, but I preffered the 100 butterfly and the 200 individual medly. First time I swam the 200 IM, I got one of my hospital stories out of it.
  9. Blogging. I think it belongs on the list considering the sheer number of blogs I have acquired at least contributor access to. Autism Experts, We Are Like Your Child, Autistics Speaking Day, Autism Positivity... some of these I have access to on multiple platforms, generally Blogspot/Wordpress and Tumblr. And then there are things like Allism Speaks and Aspie Alligator, plus I wrote a blog post for ASAN once.
  10. BOOKS. I am a bookworm. I don't always get to read much because I know that starting a book means finishing it ASAP and don't always have time to do so and still get everything done, but I still read a good bit, both for pleasure and for academic reasons.

Saturday, July 27, 2013

More Abortion and Sexism

Trigger Warning: Sexism

This was in response to discussion questions asked in my Gender and Women's Studies class about  these two articles:
Tomlinson, Chris. "Texas House Passes Contentious Abortion Bill." USA Today. Gannett, n.d. Web. 11 July 2013.
"Abortion Debate on HB 2 Starts out with a Bang." Houston Chronicle. N.p., 9 July 2013. Web. 11 July 2013.
This isn't the first time that abortion-related topics have come up in that class.

When there are political decisions involving women's rights, it seems that lately, white cis men make the decisions and the role of most of society is to have fights on the sidelines that lawmakers ignore or that they take pride in, since apparently our anger means they are getting something done. If the governor were a pro-choice woman, I think there would be at least more difficulty making this sort of ruling, as a veto would then a possibility. However, if she were pro-life (I find the name odd, considering that they tend not to support the things needed to actually keep the kid alive after being born, but it's what they call themselves so...) then there really wouldn't be much of a change in how this went. The abortion issue comes up largely as a method of control, I think. Pregnancy does involve health risks, and it does take time to raise kids, and that means someone has to do it. If a person is constantly pregnant (dealing with the changes to their body involved in pregnancy as well) and raising children, it is difficult to do other things like fight for rights or work outside the home. That's part of why birth control and abortion are so important for many (ever notice that the same people who are so against abortion are also often against birth control, when proper access to birth control would reduce the demand for abortions hugely?) and it's why it's a thing people often go after. It's not about raising standards of care, even: it's about control- look at how few centers Texas will have with that passed! That's not enough to serve a state of its size and population, and when a person can't get a safe, legal abortion, there's still about a two thirds chance that they'll go for an illegal one. Raising standards for legal ones to an extent that so many centers are closing really pushes more people into illegal ones with no standards to follow.

Friday, July 26, 2013

Disclosing Disability Relationships

I begin by saying "HEY! I got CITED IN A THING!" Because I totally did. This is what my citation looks like:
Yes, That Too. (2013, Jan. 25) "Do YOU have a child with autism?" Yes, That Too. Retrieved from http://yesthattoo.blogspot.com/2013/01/do-you-have-child-with-autism.html
I mean, yeah, my name is Alyssa, but Corbett, the person writing the paper, didn't know that or me, and she still chose to cite me.  I found out that she cited me because I met her at SDS and when she found out that I am Yes, That Too she told me about it. And I was excited because CITATIONS. I'm a wee bit academic like that.
So now that she cited me (I don't know that I was really the best person to cite, or that that was the best post of mine to cite for the things she cited me for, but hey, it works as a post you can get the thing from. I suppose that this post is the new best post of mine to cite these ideas from.)
Anyways, here are the two quotes where she cited me:
In recent blogs by autistics 10 there is concern expressed about the trend by some parents of autistics to state that their experience is equivalent to the autistic experience. (Yes, That Too, 2013).
(Yes, I did let her know that when Autistic is a noun, it is capitalized. But that's not really the point here.)
That concern, which I do have, is a real concern. I know it's one that happens with autistic people and their families. Amanda talked about seeing a journal issue dedicated to "first-person" narratives of autism where the majority of articles were by relatives, how people really do think that being the relative of an autistic person is effectively the same as being an autistic person in terms of experiences (Baggs.) That's a thing I worry about, because I know it's a thing, and because Amanda, who has been in this stuff way longer than I have, says it's getting worse, not better.
And:
"When people attempt to speak for others, such as parents of disabled children presuming to know the lived experiences of disabled adults, then the usefulness of their information may be questioned (Yes, That Too, 2013)."
I totally don't remember saying anything that eloquent in that piece, but the meaning? OH YES DID I EVER have that kind of meaning. Because it's true. It may be questioned. It needs to be questioned. There are plenty of useful things that family members and close friends can know, can learn. Like Corbett says, "Direct connection with a person in an oppressed group brings the otherwise privileged person into situations that challenge their privilege" (2013.) This is valuable. It is worth aknowledging, in both activist and scholarly circles. But.
There are issues with using a disability identifier for family members who are not disabled in the same way that we would use it for the person who actually is disabled. If a person is living with autism (I hate that terminology, but it gets used,) then their family members should get a different term. Because their family has different experiences. "While we need to acknowledge the intimate experiences of ableism gained by people living with disabled people, we also need to clarify the ways that nondisabled people have ableist privilege even when they experience ableism daily through their family member." (O'Toole 2013.)
There are also issues when people don't want to look at their privileges. That's a big piece of it going on in the autism communities, and in Disability Studies "nondisclosure allowed the field to avoid discussions of ableism and privilege"(O'Toole 2013.) That sounds like a similar issue. In the disability rights movement, they disclose their relationships to disability publicly within their activism, but in disability studies, it seems to be just within social networks. I can say that I didn't know who was and wasn't disabled for much of my reading, or what their relationships with disability were, but "no Disability Studies curriculum would include only writings by people who never identify their relationship to disability" (O'Toole 2013.) That means some people need to be disclosing. No curriculum should be all non-disabled people, either, which means that to have a curriculum, we need disabled people among those who are disclosing.
And one of the things people say is that we can't just "out" people. Well, no, we can't just "out" people. That's why we're asking people to disclose themselves. Can a person still refuse? Well, sure. But are there going to be problems in the field if most people refuse? Yeah. There was some noted irony, though: "The irony of the fact that they are using queer terminology, that they are queer allies, that they are not queer, is not lost on me. Why does it feel like they are asking me to stop this discussion? Because they are." (O'Toole 2013.) So why are they asking her to stop this discussion? That's the next question I come to. Why does this bother them? She notes that "no one objected to my signifying someone as "nondisabled," as if that was a neutral signifier." That's not what I would expect for a "doesn't want to look at their privileges" issue, but I'm still suspicious that this is happening, to some extent. It's "Disabled" that they don't want people saying (Spaz Girl.)  It's Disabled, Autistic, that people don't like me saying, (Don't Call Me a Person With Autism) and it's often a privilege thing there too.
And then, of course, we do talk about it- in social circles. Not in presentations, not in papers- there we need to be academically neutral, it seems? But those who are in social circles with scholars will often know their relationship to disability.
Typically people's professional relationships to disability are known, particularly if they teach or publish. For example, Kim Nielsen 8 (nondisabled) is an American history professor who teaches Disability Studies courses. The fact that Kim is also the parent of a person with a disability, but only became so after being in the field for nearly a decade, may be shared with close friends and may be known within small subsets of professional circles but may not be widely known. This dichotomy of information is typical in Disability Studies circles. (O'Toole 2013.)
Multiple relationships. We can have multiple relationships to disability. I have multiple relationships to disability. Most of mine are autism-related, but not all. I am Autistic. I have an autistic grandfather. The aunt I get my middle name from was multiply-disabled, and autistic was probably part of her story. I have disabled friends- mostly autistic, but not all. Some have cerebral palsy (one has CP and is autistic.) Some have epilepsy in addition to being autistic. I am young disability studies scholar. And like Corbett says, "For people with multiple relationships to disabilities, a different signifier may be appropriate in different situations—or at least the order of signifiers may change." (2013.) That's part of how it works. The signifiers are all still there, all affect our perspectives, but what is the most relevant right now? That might change.

Alyssa. "Do YOU Have a Child with Autism?" Web log post. Yes, That Too. 25 Jan. 2013. Web. 25 July 2013. <http://yesthattoo.blogspot.com/2013/01/do-you-have-child-with-autism.html>. (Corbett cited this as having an author of Yes, That Too since she didn't know my name at the time- this is the one she cited.)
Alyssa. "Don't Call Me a Person With Autism." Yes, That Too. Web. 25 July 2013. <http://yesthattoo.blogspot.com/p/dont-call-me-person-with-autism.html>.
Baggs, Amanda. "I Just Skimmed through an Issue of an Autism Journal Dedicated to “first Person" Accounts of Autism." Web log post. You Don't Need This Junk. You Need a Cat. 15 July 2013. Web. 25 July 2013. <http://youneedacat.tumblr.com/post/55533425924/i-just-skimmed-through-an-issue-of-an-autism-journal>.
O'Toole, Corbett J. "Disclosing Our Relationships to Disabilities: An Invitation for Disability Studies Scholars." Disability Studies Quarterly 33.2 (2013). Web. 25 July 2013.
Spaz Girl. "Don't Sanitize My Disability Justice." Web log post. That Crazy Crippled Chick. 25 July 2013. Web. 25 July 2013. <http://thatcrazycrippledchick.blogspot.com/2013/07/dont-sanitize-my-disability-justice.html>.


 

Thursday, July 25, 2013

Book and Song Thoughts

Trigger Warning: references to caregiver violence, ableism, and eugenics

I read a lot of Tamora Pierce's work. I like it. I also listen to a lot of PONS. When I started listening to them, they were called High Tide.
I've been re-reading the entire works of Tamora Pierce lately because I'm writing a thing for FYTortall for them. I finished the rough draft a few days ago, and I think I'm going for a whole book on the topic. We will see. (Very few, if any, of the full-length sections will appear here. I will probably keep blogging short stuff about ideas I have and I might put up a list of topics I'm considering.)
Anyways, from Trickster's Queen:
"He was a great god and could do what he wished with her. If she was going to die, she wanted to die arguing."
That's Aly thinking. She's pretty cool.
The other words I've got in my head are from an older PONS song. It's part of a verse they have since cut, and sadly the only video I've found with the whole second verse is friends only...  (WHY is it that both times I've talked about PONS lyrics I've been unable to actually find a publicly available recording?) The song isn't actually about the stuff I'm getting out of this bit of it, but art's cool like that. (If it were about that, I don't think it would have gotten cut.)
Can we wait? Does it help if our cause is lost?
I won't give a second thought,
The solution is to trouble the waters, my friend.
You'd rather watch than sink or swim?
Yeah, I'm in a "I might not be able to win, but I am at least going to go down fighting" space at the moment. It's what happens when a large portion of the world is convinced that what we really need is for there to not be anymore people like me without even knowing what it means to be like me. Without knowing what it means to be like any of us. Without knowing what it means to be like Amy, or Henry, or Lydia. (Remember, if you're neurotypical and have an autistic kid, your kid won't be exactly like me because HELLO I AM AN ADULT AND YOUR KID IS A KID AND NO TWO PEOPLE ARE EXACTLY THE SAME, but I am like your kid in several important ways.)

Well, sometimes giving up is what happens, but remember, a lot of autistic people are really stubborn. And also we like being alive and we like who we are and maybe we don't think that "make sure no one is ever like us again" is a good goal. I don't.

And a lot of abled people have a lot of power over us. I'm safer from that than a lot of people are, since the services I need are ones that a person can hire due to being a busy professional as opposed to things that everyone knows are for disabled people. I could (and probably will- engineers tend make enough that I should be able to afford it) hire someone to do those things for me without telling them that I'm not actually capable of doing those things. Yes, I know how. No, I can't actually do them, and definitely not in the time frame needed for doing them all myself. But there are a lot of us where changing "great god" to "caregiver" would leave that first quote pretty much true. And a lot of us do die arguing. Some of us only live because we argued, knowing it was probably a lost cause and trying anyways.

So yeah. I'm stubborn. I'll trouble the water. I don't care how many people tell me it's a lost cause, or that I should want people like me to stop existing (why would someone want that?) or whatever else. I'm not going to watch; I'm going to argue.

Wednesday, July 24, 2013

You were attacked by WHAT?

Warning: Descriptions of major injuries. (Animal-inflicted, no -isms as motivators)

This is another hospital story (first one here.) I defied what people thought was possible more than I defied dominant medical paradigms here, but I guess I did defy expectations of what patients (especially patients who are minors!) are supposed to do at some points after the whole neither dying nor losing limbs when expected to thing.
Short summary of how I wound up in the hospital: There was a mother pig and her piglets. People were trying to move them to a bigger space. I brought some food out to those people. One of them picked up a piglet, who then squealed. I was the human closest to the mother at the time. This mother was an Old Spot pig, full grown, around 800lb. (This is a breed known to kill and eat cows on occasion.) She went after me. Rammed me in the butt, I flew about 8-10 feet and landed on forearms and shins. She bit my right inner thigh, I kicked her in the face with my left leg. This apparently was unexpected, and I was able to scramble to my feet and run into the house, after which we went to the hospital.
So we get to the hospital. My mother has a thing she has to be doing in a different part of the hospital at the time, since she's a doctor, so we split up. I actually make it to the ER before she makes it where she's supposed to be, injured leg and all. This pain tolerance thing comes in handy sometimes. I explained what happened to the person at ER check-in, and I told her I was under 18 and where she could call my mother for permission. She called; mom wasn't there yet. We waited till mom called back so they could actually check me in. She told me to have a seat in the waiting room. I said I'd rather stand, since my butt was bruised, and I stood. Not much in the way of rebellion yet- this is a receptionist, not a doctor, but she is an adult and I am not an adult, so it's not zero either.
It's a small hospital and I get seen pretty fast. They keep trying to give me pain meds, which I refuse. I don't like pain meds. They mess with my ability to think. They keep trying for a few minutes, but then they stop for a bit since I'm not exactly the only patient, it's a small place, and they do have more important things to do than argue with a stubborn 16 year old who is stable and doesn't want a Tylenol while she waits for them to have time to do more.
Once they have time to clean up my wounds (scratches and scrapes, mostly, since I was wearing long shorts that kept the pig from breaking skin and turned it into a crush wound instead,) they saw how badly hurt I was. They also saw how swollen the bite area was- that thing was the size of a cantaloupe sticking out of my thigh, and it would stay that way for about a month. This started them up with the pain meds thing again. (They hadn't seen it before because I showered and put on clean clothes before coming to the hospital, and the clean clothes was a dress.)
As much as patients aren't supposed to challenge doctors and kids aren't supposed to challenge adults, there wasn't actually much they could do- my mother's consent had been that they could do things I said they could do until she got there, and talking me around wasn't going to happen. They could have just given them anyways, I suppose, but they would have been taking the risk that my mother might back me up and not them. She was a doctor and an adult and not a patient, so she actually had status in their eyes. (As it happens, she always backs me up on the pain meds thing, and on just about everything else hospital-related too. I think the only time she didn't was the time I wanted food, real food, and they still thought they might need to operate. That's an actual medical thing, not eating for a certain amount of time before an operation.)
The pain meds were really the big thing here. I was pretty good about other stuff- I disclosed all my allergies, which were kind of annoying to deal with, but disclosing allergies is a thing you're supposed to do. It's also really important, because I'm allergic to the -cillin family. I've had the opportunity to react to two different -cillins because of some older medical fail, but it is now on my paperwork that I am not to have any of them so no one can make that mistake again. I also had to go digging through my entire records because everyone forgot about the second one and I couldn't remember what it was even though I knew there was one. If it hadn't been another -cillin, that could have been bad.
Mom gets there. They try to ask her about pain meds. By this time, they're trying to get me onto heavy-duty prescription stuff. She says they should be asking me. That's actually breaking some paradigm stuff, since parents are supposed to make decisions for their children under 18 and since doctors should have authority over patients. (Remember, she is a doctor, and while she's not an ER doctor, she was doing doctory things at this hospital before. That's why she wasn't there the whole time.)
I'm stuck sitting at the hospital for a while while they figure out what antibiotics to give me. They don't exactly get a lot of people surviving attacks by this breed of pig (by not a lot I mean the records I heard them get from other hospitals were all DOA or bites from near-piglets where the parents weren't around.) They had to talk to several hospitals and an allergy specialist to figure out what to give me. And while they did that, people kept trying to talk me into pain meds. I don't know why they thought I'd give in, but hey, they're not used to stubborn 16 year olds telling them no and getting backed up by their parents. It goes against all the things they've been told about how this works, after all. (They eventually tried "take the prescription and you can fill it if you need it." We wouldn't even do that.)

Tuesday, July 23, 2013

Bad Idea.

Trigger Warning: Mentions of hate crimes and discrimination against autistic people. Includes murder. Also, lots of "but the family!" stuff.

There was a post to my page, on Facebook. It was marked automatically as spam and I deleted it, so I doubt you saw it, or who it was by or where it linked to. And it was at least a week ago by the time you see this. I could have rearranged my queue to fix that, but... I'm about to rip the post to shreds in many ways, and I suspect the page owner would prefer you not know who they are. (If they show up here and tell me they want the shreds-ripping linked to their page, I'll do it. But I doubt that's the kind of publicity they want.)

Dear Admin I invite you to visit my page I made for my 19 year old Autistic brother, could you please like it and share it with everyone, if you don't mind.
Dear Admin. I know this isn't personal, then. Probably stuck on as many pages as possible. Not a great sign, but eh. I did the same when trying to draw attention to Autistics, not Monsters. I didn't write "Dear Admin," though, and I gave each page a few moments glance to see which pitch would work best.
I made for my 19 year old Autistic brother. You capitalize Autistic, and it's identity first. That's a good sign. But you made it for? I am a bit worried, here. Because, you see, I know how often family members make this sort of page and then share things about their autistic relations they really have no right to publicize, without the consent of the person they post "for." So I worry. 
I'd be grateful . The purpose of my page is to spread awareness about this disorder among common public too.
Awareness. I know that awareness ranges from great to horrible, and I don't trust it because the people doing good awareness tend to also be aiming for acceptance and nowadays often say "autism acceptance." But there are enough who don't know. So, I'm trying not to be too hard.
And I know there are many who still know nothing, or close to it. I disclosed to one, about eight months ago. It was the smoothest disability disclosure I've ever had, and by far the best- he had only my word to take for what being autistic means for me, and no insistence that he knew my disability better than I. (People who have gotten good awareness are fine; people who have gotten bad awareness are far harder to disclose to or talk to than those who know nothing.)
People with Autism are as much a part of this world as we are.
Um. This seems kind of othering. And "we." Um. Hi. I'm Autistic. This is one of my super-huge pet peeves. You do not speak to me like I am a neurotypical family member, you do not write to me like I am a part of some "we" that is different from autistic people. You now get no benefit of any doubts going forward. None. Because you just assumed that the person you wrote to was allistic, and you probably don't even know you did it. You probably never thought of the possibility that an autistic person would read this, but you should have.

About 1 in 88 children has been identified with an autism spectrum disorder (ASD).
OH GOD YOU WENT THERE. No. Stop. Stop right there. Children? I know children is the age group where we've got 1 in 88 diagnosis, but we've got a British study finding 1% autistic spectrum in adults living in households. Not institutions, not group homes, plain old households. So that means that at least 1% of adults are autistic too, stop talking about freaking children like it's just kids who are autistic you are part of the reason people think we're all kids when we're not. You are adding to this problem. And people will ask where the autistic adults are and even with your brother an adult (19>18, he's an adult even if someone decided on guardianship and he's never allowed to use that fact) you probably won't know where we all are because you don't see us and you don't think of the idea that we are here.
The high prevalence of autism is of major public concern, especially for families like mine who are already affected.
 I mean, it is, but not for the reasons I suspect you're going to go for. Especially when you're going "families like mine who are already affected." Know what we need? Civil freaking rights. Medical freaking rights. For people to stop deciding our lives are not worth living. For people to stop giving sympathy to our murderers. For people to quit trying to neglect us to death. For them to stop succeeding. Those things need to be of major public concern. So does education- real education. That doesn't need to mean intensive academics for us any more than it needs to for anyone else, but that same academic rigor needs to be an option if we decide we want it, and not a "you'll have to fight for it and make a national level fuss for it" option. A "here, it's right on the list of paths we're suggesting" option, with accommodations as needed. Just like vocational schools should be, for everyone.
I mean, yes, things like respite care (called babysitting when the kid's not disabled...) are important. Maybe, just maybe, if people weren't fearmongerers with their awareness campaigns, there would be more babysitters willing to learn to work with autistic kids? More extended family members willing to watch their autistic relations?
It's stressful for them and stressful for parents to come to terms with seeing their child change from "normal" to a withdrawn silent stranger who adopt unusual behaviours throwing tantrums, in frustration and depression at not understanding the bewildering world around them.
Ok. So you use the ou, not just the o. Which means you might actually be in Britain. Maybe not, but it's at least possible. If so, that study was in your country, in your newspapers. CHILDREN?! CHILDREN?!
And the whole change from "normal" thing. That's not how it works. Neurotypical kids don't suddenly become autistic. And conflation of meltdown with tantrum is not OK. I was a small child once. I threw tantrums. Not often, but I did. I also had meltdowns. I still have meltdowns and shutdowns both. I have no clue how you would mistake either my meltdown or my shutdown for a tantrum, but apparently people can't be bothered to learn the difference. Either that or they think pushing and pushing and pushing a person in meltdown until they do push back in order to toughen them up or something is smart.

With patience and love we must try to get at least a glimpse of what their world is like.
Or, you could, I don't know, read the things we write! I can't with this. I just can't. With the patience to sit down and read a freaking blog post or book or to sit down and listen to what your autistic relative is telling you, even if spoken language isn't (maybe never is) how they tell you. I can't always talk. Amy Sequenzia never talked. Evie talked a little bit, when she was younger, but she stopped (possibly because seizures, I don't know.) Henry Frost doesn't talk. There's a lot of us who don't talk, or who talked late, who are still saying things, and your autistic relative can tell you things too.
I mean, yes, there is some patience involved in understanding what we want and need, but that doesn't actually require understanding what our lives are really like. I hope "glimpse of their world" isn't a final goal, and the implication that our world is not your world (same world, we just perceive it differently) is kind of creepy. 
The disorder varies from mild to so severe that a person may be almost unable to communicate and need round-the-clock care.
There's a lot more variation than that. It's not a strictly less disabled to strictly more disabled continuum, and it's not a strictly less autistic to strictly more autistic continuum, and even when you can get a general sense that one person is more "obviously" autistic than another that doesn't correspond with generally more disabled, and there's situational differences too. That's before we get into "my child is lower-functioning autistic because of all these conditions that aren't autism." Functioning levels really don't work well. Amanda Baggs wrote about that, a bit, and how dangerous it can be when a person thinks they are strictly more disabled in every way. I imagine family members who think their relative is strictly more disabled in every way are just as dangerous.
I would also like to mention that a large percentage of Autistic children live at home and are supported by their families.
CHILDREN. Want to know the percentage of children in the general population who live at home and are supported by their families? It's pretty big. It is, in fact, considered the normal way for children to live. Shocker.
There are several challenges and hardships faced by such families.
Ok. There are. And you do need more. You're asking in the wrong place. I don't know if you've ever seen the diagram of who you vent at and who you comfort? Disabled person can vent about their disability issues (ableism generally to blame for most of them) to pretty much any close relation. Close relations vent to further relations, friends. And outward it goes. You are a relative of a disabled person. I am Disabled, same disability even. You do not vent to me. You vent elsewhere. You get your resources from further outside the circle, or you take what is offered freely.
Showbiz is a very powerful media and unfortunately used mostly to exploit Autism and to make more market value.
I'd like to know what they are doing to exploit autism and autistic people, according to this person, but my guess is that they're upset about autistic characters on TV because "stop romanticizing autism" (on their page) doesn't sound much like "Autism Speaks, stop fearmongering for money!" to me. It sounds like "You're portraying autistic people as real people with lives but also as the butt of jokes! Stoppit!" Which, um, no. We need to be in stories, we need to see people like us. Do it better, yes, please, but keep us in your stories. The accidental autistic characters shouldn't be better characters than most of the purposefully autistic characters (Dan Harmon's Abed may be an exception. Michael's Clay definitely is.) 
Families with Autistic members are in need of social support and awareness and the fastest way is through media.
That's true enough. But what autistic people need and what you want? Somehow I doubt they are the same.
Please support my page and cause to utilize showbiz to prevail awareness about Autism.
Basically what I said last sentence. I don't think you know what actual autistic people need. More of the same awareness most organizations try to spread isn't it. More family members talking about how hard it is to be related to us isn't it. More people complaining about autistic characters being actual characters isn't it,

Monday, July 22, 2013

1984 and... Neurodiversity?

Trigger Warning: Ableism, sexism, totalitarianism

Funnily enough, yes. Michael started it, I think. If not, he at least came up with it independently- I haven't googled yet to see if anyone else is doing this sort of thing, or with this book. That Autistic That Newtown Forgot is in on it too. I've actually used 1984 as a major source in research papers twice. My senior research paper in high school was about fear tactics and social control. It's got problems. I'll probably talk about those problems in a later post. (Autistic That Newtown Forgot, I'm looking at you because that's your thing too.) I talked about 1984 again in "Dehumanization of the Party and its Members in 1984," my final paper for a summer literature class I took for general education credits. I mentioned it briefly when talking about why moving graduation indoors out of fear was a bad idea. And yes, I had a bag with me at graduation that security didn't know I had. It was that pathetic. But now? We're talking about 1984 stuff and neurodiversity stuff.

Michael talks about the concept of facecrime, quoting the bit in 1984 where it is mentioned.
In any case, to wear an improper expression on your face (to look incredulous when a victory was announced, for example) was itself a punishable offence. There was even a word for it in Newspeak: facecrime, it was called. (Orwell 65.)
 This is a book written in 1948, and while the word facecrime is not used in literature describing the "treatment" of autism, the concept is there. Autistic people are often described as having a "flat affect," and this is one of the "symptoms" that people aim to treat with things like ABA. One of the things that autistic people are taught, then, is quite literally that facecrime gets you in trouble with adults. Leaving out the word facecrime and choosing flat affect or inappropriate body language/inappropriate facial expressions doesn't change this.
Then An Anonymous Newtown Autistic gets into neurotypical performativity based off the idea of gender performativity. I think about a female character I read as autistic, who spends 8 years pretending to be a boy. I just finished the rough draft of a piece about her author's works in general and neurodiversity, and I mentioned how some of her gender passing stuff parallels the experiences of autistic people passing for neurotypical. I read both Michael's and the Newtown Autistic's blogs again. There is even a point where facial expressions show up as a thing Alanna may need to control in passing as a man- as the heir's squire, she has to dance with the women at social events, and she can't exactly show how much she dislikes it: people would suspect "Squire Alan" to be off in some way. Perhaps they would only think him gay (not accepted in Tortall, unfortunately,) rather than guessing that Alan is really Alanna, but... not a safe risk, especially when even the less worrisome of the possible assumptions could still get her into trouble. An autistic woman passing as a man must control her facial expression, or bad things could happen: There is gender performativity; there is an autistic person; there are facial expressions at play.
Then there is the idea of Ingsoc aiming to make its members inhuman, while autistic people are often seen as inhuman (subhuman, often.) Ownlife, eccentricity: condemned by Ingsoc, so an actual autistic person in the Party would be in trouble quickly, as we are by nature different from the typical.
Or how O'Brian wants to cure Wilson of his "insanity" of believing the past immutable, the idea of sanity being culturally constructed, the idea that when one is considered insane almost anything can be further evidence of insanity (Rosenhan 1973.) Often enough, it is from body language (and real-time readings of reactions by machines), including facial expressions, that O'Brian uses to "know" what Wilson is thinking, so it is once again a sort of facecrime, though Wilson is already convicted and doomed. With many autistic people, it is often the body language and facial expressions that authority figures should know they can't actually read which get us into trouble- either our expression is "wrong" for how they and we know ourselves to be feeling, or they insist we feel what they would express with our current facial expressions, which are the "wrong" thing to be feeling. By being autistic, we are already convicted and doomed, just as Wilson is already convicted and doomed by being in the Ministry of Love.


Orwell, George. 1984. New York: Penguin, 1989.
David L. Rosenhan, “On Being Sane in Insane Places,” Science, Vol. 179 (Jan. 1973), 250-258.

Sunday, July 21, 2013

The Freak Show

Trigger Warning: Ableism

I didn't see it. A friend of mine did. A father referred to a group of special needs young adults (I don't love the term, but it's the one the friend used and it's a lot better than the one this father used, plus I don't know the language preference of the people in this group- that might be the one they like, and the preference of the person being referred to is what matters here) as the freak show, in front of his kids. It was loud enough for my friend to hear it. Depending on physical location of the various people, I can't make any assumptions about the young adults having heard, but I wouldn't be surprised if they did. Especially if sensory processing issues are part of the story- I know that my ears are super-sensitive and I sometimes hear things people say, thinking I'm out of earshot. (Did he think about the idea that the people he was talking about might hear him? Would he care? Would he assume that they wouldn't understand if they did hear? I understand what people say in front of me, even when I can't speak...)
There are some disabled people (that's a term I use) who feel like they have reclaimed the word freak. There are plenty of neurodivergent people (also a term I use, yes it applies to me, no it's not a synonym for autistic because there are ways and ways to be neurodivergent) who feel like they have reclaimed the word freak. I tend not to use it for myself, but I know it's a thing. Freaks, Geeks, and Asperger's Syndrome is a book title, and I think it was written by an autistic person.
But.
That's not the same thing as a presumably able-bodied neurotypical man calling a group of disabled people a freak show. Freak shows are where differences (often disabilities) are used as entertainment. They're often exploiting the people in them. The whole idea of a freak show basically comes down to "point and laugh at this person." That's not OK.
That's not the same as a father doing so in front of two young children. Ableism is learned, folks. This is part of how it's learned. I don't want to live in a world where everyone wants to ignore the ways I am different, certainly, but this isn't the way to pay attention to differences.
This? It implies that a freak show is where they (we, I) belong. It implies that we don't belong in mainstream society. We're having a lot of trouble fighting for inclusion, and this sort of attitude is part of the problem. This sort of thing? What we call people is important, it shapes how we think about them, it shapes all kinds of things. And calling a group of people the freak show? It shapes thinking towards a whole lot of bad things. It's not OK. It's not what we should be teaching the kids.

Saturday, July 20, 2013

Senior Paper on 1984

This was my senior research paper in high school. I'm sure it's got problematic stuff in it. Because of context, though we still needed to cite 1984 and/or Brave New World in text, they were not to appear in the Bibliography. So they aren't there. After this paragraph, everything is exactly what I turned in, minus the cover page. I'll probably talk about whatever problematic stuff I put in it as a later post, unless someone wants to do it for me first, but I wanted this up so I could point to it, since there seems to be some discussion of the book going on with other bloggers I follow/talk to.

General Trigger Warning because I don't remember what all is in here but I discuss a lot of things.

You are not as free as you might think. Within the rule of law, you have the right to do whatever you want to. You have the right to vote however you want to. What you are short on, however, is the ability to choose for yourself what it is that you want without being manipulated. Every day, you are bombarded with messages, both stated and sneaky, trying to make you think and feel a certain way. Manipulation works as well as it does because pain and fear drive people, because people tend to believe what they hear, especially if it is repeated, and because everyone wants to be as happy as possible with as little work as possible.
Manipulation Through Fear
We live in a world of fear, with danger around every corner. Children are taught not to talk to strangers because people they do not know could be evil people who want to take them away from Mommy and Daddy to hurt them. A mother who allows a nine year old son to ride the New York subway alone is viewed as irresponsible (Skenazy). To be unafraid is to be a daredevil lunatic, and in her case, a bad enough mother to make national TV over the incident. Parents are now afraid, but it is not only parents. It is everyone, and the government wants it this way so that doing anything besides accepting the restrictions imposed to protect us from our fears is unpatriotic. It is letting the terrorists win if we do not do everything in our power to catch them and stop them.
However, a program that would truly protect us fully is impractical. Anyone could be a terrorist in theory, and we cannot prevent an attack that can come from anyone to hit anywhere. Trying would only bankrupt us even more than we already have been. The advantages, therefore, must lie with the other side. That was our assumption (Fallows). In reality, we have a much stronger position than any member of the government would have us believe. To admit that the physical damage of an attack is impossible to prevent but the true damage would come from our reaction, which we can control, would reject the politics of fear.
Rejecting fear as a tool may be a nice campaign idea, but it is not a way to effectively control a population. Former President Richard Nixon admits to it. “People react to fear, not love,” he says. “They don't teach that in Sunday School, but it's true” (qtd in Altheide). With a reaction to fear that will make people do whatever they can to feel safe, but little or none to the advice of a figure using love, fear is the tool of choice. Who takes the advice of their parents without having something to fear should they not? Taxes, on the other hand, get done on time because people are scared of the IRS. Fear works.
Because fear works, so does propaganda. If the media is afraid of what could happen for promoting anything but the government line, and people are afraid because the government line is scary, then everyone will listen to the government in order to be kept safe. By keeping debates off the subjects that could make people less afraid, taking advantage of the human wish to think the best about themselves, and keeping the media in line, propagandists can spread any message they choose (Shah). Terror is the way to do it, leading to the question: Are the terrorists truly the enemy, or simply the scapegoat with which to make the herd afraid enough to listen?
It is not as if Al-Qaeda -Scared as soon as you read the name? If the media did its job well, you are- can do enough damage on its own to destroy America. According to Killcullen, the threat of Al-Qaeda comes now mainly from our reaction to them. Much like the threat of European anarchists, who only killed perhaps 2,000 including the Archduke Ferdinand, the real destruction comes from the government response (Fallows). In the case of the anarchists, the response was World War Two. In the case of Al-Qaeda, the reaction is the “War on Terror,” which can never end because it is against an idea, not a nation. It also allows for an attack on any nation home to terrorists and unwilling to eradicate them. Because we define who terrorists are, this provides a blank check to go to war as often as deemed necessary by the government and for as long as is beneficial. Our media, to the benefit of our leaders, created spectacle around the attacks of September 11, making the obvious response the one favored by policy. “Terrorists have long constructed media spectacles of terror to promote their causes, attack their adversaries, and gain worldwide publicity and attention” (Kellner). We did the job for the terrorists with our constant coverage, not even breaking for commercials. The only difference is that the spectacle promotes our goal. This is the difference between good and evil: Good creates fear for the good of whatever side I am on, and people who create fear for any other cause are Evil. The threat is also real, making the fear that Good provides completely logical, whereas Evil makes threats of American Imperialism spreading, which simply cannot be. This is excluding all of our actions in the Middle East for the past 50 years, of course, which were rarely related to the claimed goal of spreading democracy. Using war, fear, and destruction to create regimes that are friendly to us, then having another period of war to curb our own liberties with when they turn unfriendly, is the real goal.
With fear defining the wartime attitude and wartime infinitely extendable, pushing through legislation that supposedly trades liberty for security is always possible. The Patriot Act, for example, passed during the shock-based fear after the attacks of September 11, 2001, takes away many levels of privacy. By framing the Patriot Act as an attack upon the agents of terror, the Bush Administration successfully played upon the politics of fear. It finds a target that we are afraid of, assumes that further attacks will come from it, makes an attack upon it, and kills dissent as against what we need. Fear will call you unpatriotic for being against the safety reforms that take away from out liberties (Altheide). Being unpatriotic is equivalent to being one of the terrorists is Bush's with or against philosophy, so no one wants to be the one to stand up and say that the curbing of liberty is wrong in all circumstances, or that perhaps trading liberty for security is not worth the cost.
An extreme case of trading liberty for security shows up in George Orwell's 1984, commonly used as a warning of what communism can look like whenever a “socialist” reform is proposed. Communism is totalitarian, and therefore socialism must be too. This makes anything good for the workers, from rights for unions to universal healthcare, attackable with references to 1984. This is yet another use of fear to destroy rational thought and make everyone hold the official sanctioned opinion. Referencing 1984 and communism to turn people against a reform that has socialist tendencies is in fact more like the manipulation in 1984 than allowing many of these reforms would be. Calling the option that we are not currently using evil simply because it is not exactly the same and preventing a true understanding is the exact method of all three world powers, all using nearly the same philosophies
to control their populaces. In fact, the warning of a 1984-type world is most appropriate when understanding of the opposing view is prevented, when surveillance is increased, or when liberties are curtailed. Providing healthcare to people who need it is not the thing to attack with a reference to the world of Winston, though it has been used along with the death-panel panic.
Opponents to reforms and proponents of security bills are not alone in using fear as a tactic. Despite campaign rejections of the politics of fear, President Obama has used fear for his agenda too. The difference? He pushes healthcare instead of war. Fear is still the tool because fear is known to work. There are three main things for the middle class American to fear as far as his arguments go: “They (Fear No. 1) lose their job or income, then (Fear No. 2) fall seriously ill and then (Fear No. 3) receive the health care they need, but lose valued assets” (Saunders). I would expect something as useful as universal healthcare to be passable without the use of fear to manage opinion, but seemingly even this requires control through terror.
Changing the thoughts of the people to the thoughts of those in charge may seem like a difficult task. However, people who are afraid are not thinking rationally. Rational thought is the enemy of those who wish to control public opinion, and therefore killing it with fear is a the method of choice for government agencies needing to garner votes for a change they hope to make.
Manipulation Through Repetition and the Tendency to Trust
Our codes of right and wrong may seem obvious, but what would happen if the rules repeated so often in youth were drastically different from the ones we hear today? Hear something enough times, or be forced to take it as a given in order for a conversation to make sense, and eventually you will accept it as true. Daily relationships could not function if people could not believe what they were told, so the default assumption is that we are being told the truth. By taking advantage of this trust, and by making sure that the intended message can be recalled effortlessly through repetition, opinions of entire populations can change in time frames shorter than we might like to believe.
In today's political debate, key phrases, get used again and again in order to hammer the message in. In healthcare reform, the mere suggestion of a new bill sparks outcries: “Government bureaucrats will choose your doctor and prescribe your treatments” (Hertzberg). Both sides used key words that sounded good to pull opinion in their favor- Democrats using the “public option” and “universal coverage” to improve the the image of the reforms, preferring to gloss over bureaucratic inability to make anything cheaper, while Republican cite imaginary “death panels” and repeat “your doctor, your plan” against reforms that offer an additional option for what “your plan” could be (Hertzberg.) Neither side is unbiased, and both use their key terms to try to sway opinion.
Historically, repeating slogans has been shown effective in bringing the young to the side of the better slogan-writers, typically in the pay of either the richest person or the one with the largest army. Nazi Germany's Hitler Youth joined for the parades and the marching, but quickly swallowed the whole philosophy and began to turn in their parents. The deadly success of indoctrinating the Hitler Youth lends credence to the young heroes of 1984, turning in their parents for any sign of unorthodoxy. Bringing the children into the Spies at the age of five, teaching them to listen at keyholes, and feeding them the thoughts of the Party creates a human incapable of thinking anything other than pure Party doctrine and with no reasoning against turning family in (Orwell.) With a doctrine repeated infinitely from an age when children are often unaware of the possibility of lying and therefore completely trusting, the government chooses what the people think before they have the language skills to argue. By the time these skills are acquired (if ever- the point of 1984's Newspeak is that this never happens), thoughts against the official doctrine are impossible. In Huxley's Brave New World, this repetition begins even earlier and makes rebellion similarly unlikely. Conditioning begins in the test tube at the same time that life does, with associations made between cold and discomfort for those who will live in the heat. It then continues by putting books with pain for low-caste workers who do not need to read, and ice cream with death to desensitize. As soon as verbal skills are acquired, hypnopaedia, moral education in sleep, begins (Huxley.) By forming associations that circumvent rational thought and feeding lines that become familiar and can be regurgitated whole, the mind is filled with the ideas of the ruling class without anyone needing to think about these ideas. The familiarity is intentional- people are more comfortable with what they know (“Rhetoric.”) By making sure people hear the same ideas over and over again, knowledge and comfort are enforced both in the distopias of fiction and in modern politics. Then only the inevitable acceptance is required, with little to no rational thought.
The lack of thought needed for swallowing these ideas is purposeful. According to Noam Chomsky, “a principle familiar to propagandists is that the doctrine to be instilled in the target audience should not be articulated... The proper procedure is to drill them home by constantly presupposing them, so that they become the very condition for discourse” (qtd in Shah.) This too is used to great effect in Orwell's 1984 in the use of Newspeak. The assumptions needed for communication include Big Brother being good and all foreigners being bad. To say, “Ingsoc is ungood” would be possible, but it implies the contradiction because good is part of Ingsoc, or English Socialism (Orwell.) Cognitive dissonance is extremely uncomfortable and needs resolution as quickly as is reasonably possible, so the easy way out is not to say or think things which go against the presuppositions used in everyday function.
With following the ideas of the ruling class unavoidable to the properly conditioned, the idea of absolute truth, other than whatever this ruling class thinks, must fall. There lies totalitarianism, which is ideal for those who no longer hold their distinction between what is true and what is not (Elshtain.) In Oceania, this distinction has fallen. History is alterable and has therefore never been altered (Orwell.) The alteration always includes the removal of itself from the timeline of the world, so that everything stated by Big Brother is always correct. There is no such thing as universal truth, and therefore only the accepted truth matters. Have the right people say it and it is true.
Say it the right way, say it often, start it young, and have the right people take up the statements. Eventually, everyone must believe because the human tendency is to trust.
Manipulation and the Pursuit of Happiness
Happiness is a universal desire with the right to pursue it stated in our country's Declaration of Independence, but what if following happiness were just another way of letting someone control you? Religions preach the way to eternal joy, that holy grail of happiness. Few deny the influence of the church in history, and though looking at how the people were made to fall in line may seem trivial, it is worth examining the methods behind any organizations as potent as the church. The typical analogy of carrots (eternal joy in heaven) and sticks (eternal damnation in hell) shows the methodology well enough. It worked and continues to work because of the avoidance of pain and the draw of pleasure.
In raising the generation where everyone gets a prize, those in charge are aware that self-esteem is one factor recognized in why people are happy or unhappy. People want to think well of themselves. A good opinion of their home country does not hurt either. Both of these factors in well-being can be taken advantage of by skilled diplomats, politicians, and propagandists (Shah.) This is how bandwagon-based advertising gets its effectiveness. If all the cool people are buying this cool new car, then I want one too so that I can be cool, right? However, there is a very good chance that the cool people are not buying the car yet when the advertisement comes out. They begin to buy when they know the other cool people are, which they know from the ad that convinces them that this is the case.
In diplomacy, there is also such positiveness. Rather than uniting against a common enemy, which lasts as long as the enemy is common, a goal that both groups share can be established. By respecting others values and the communication of those values, a diplomatic resolution can often be reached (“Rhetoric.”) By keeping in mind that the others are human and want to think the best of their homeland and themselves, how to phrase things in order to meet the goals of diplomacy becomes clearer. Now look at the relationship between a government and the people as a diplomatic one. The ruling group knows how to phrase arguments such that disagreeing would appear to go against basic cultural values, especially if they have previously manipulated those values to meet their goals, as is the case in both China in the Cultural Revolution and Brave New World .
In China's Cultural Revolution, the adults had to either be re-educated, scared into obeying, or taken out of the picture. Youth, however, could have their original values brought into agreement with those the government needed them to have. The already extant obedience to authority, especially elders, which comes from the Confucian tradition of China, needed only the modification of the highest obedience to Mao Zedong and the Communist Party. Just as in the ideas Confucius put in his Analects, the job of the government bureaucrats is to be looking out for the best interests of the people and the job of the people is to obey the leaders. Even though the best interests part was questionable during the Revolution, when people starved in re-education camps, everyone had their little red book, and children were taught that Mao knows better than Mother and Father, the idea that obedience to the authorities who are looking out for the peoples best interest brings happiness kept the masses in line.
In Brave New World, the values are very different from those of China in the Cultural Revolution, but the obedience is the same. Rather than saying that the World Controllers know better than Mother and Father, the idea of parents is simply abolished. Consumption, everyone belonging to everyone, and drug use are hammered in through the endless repetition of hypnopaedia, then used to keep the masses happy and obedient (Huxley.) People who are convinced that consumption will make them happy are pleased to consume all the products of industry, which is needed so the products do not build up forever. With everyone belonging to everyone, sexual desires are quickly given into and met, so there lies a source of physical pleasure and a lack of angst. Should even that fail, there is always the perfect drug, soma. This hallucinogen brings pleasure outside of time for as long as the effects last and has no hangover afterwards. Because everyone wants their happy pills and the government controlls the supply, the chase for happiness forces obedience to the World Controllers whims, always directed towards keeping power.
Conclusion
Pain and its fear, familiarity from repetition, and the desire for joy are all used every day to bring the masses ideas in keeping with those of the people with power. “The object of power is power,” O'Brian reveals while breaking Winston down (Orwell 217.) The object of manipulation is also power: power over peoples actions, thoughts, and feelings. If the ability to manipulate on a massive scale were as refined as it is in 1984 or Brave New World, it would surely be used to the same extent. While this point has not yet been reached, a hard look at history shows that we are closer than we might like to admit. Guard your freedom well, what of it you have left. With the ability to manipulate how you think and feel, there is less freedom left than you might think.


"Rhetoric." DIPLO | Online Courses in Diplomacy | Research on Contemporary Diplomacy | Internet Governance. Web. 15 Apr. 2010.
Hertzberg, Hendrik. "Lies." The New Yorker. The New Yorker, 21 Sept. 2009. Web. 15 Apr. 2010.
Skenazy, Lenore. "Is It Just Me: Let's Stop Scaring Our Kids." Readers Digest Oct. 2008. Readers Digest. Web. 19 Apr. 2010.