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.

Tuesday, July 31, 2012

Hurry up and wait.

Science research really seems to include a lot of hurrying up and then waiting. Seriously. I need to be right there when the half hour is up, but there isn't anything to do during that half hour. Or someone else is using the machine I need next. That's actually the story right now. I need the Dynamic Light Scatterer, and it won't be open for another 50 minutes or so. So I write stuff.
Research is going well, if slowly. I make some undergraduate newbie mistakes, like having half my liposomes leak out during extrusion, but the sample size I work with is smaller than the sample size I make because we KNOW things can go wrong like that. Or I wait and bother the professor about a question any of the PhD students would have known the answer to, because I DON'T know the answer. Or I don't realize that 10 millimolar is too concentrated for measuring surface charge, and that messes up my results. Whatever.
But they're OK with that, because they know I'm new. And I'm getting better at it. And no one cares if I stim in the lab, as long as I don't knock things over because of it. (All of the employers I've had where the job was not purely online have seen me flap. None cared. One of the purely online ones may have just found out that I'm on the spectrum from a conversation I had with a student about autism, but if they did, they show no signs of caring about that either.)
Anyways, that's my story. I spend a lot of time hurrying up in order to wait.

Saturday, July 28, 2012

Apparently autism either means you get away with everything or you get away with nothing.

So far as I can tell, there are two main categories here: Autistic people who have gotten away with everything because their parents shielded them and used their autism as an excuse for not disciplining them, and autistic people who got away with precisely nothing. No flapping, no stimming, no perseverating, no nothing.
When I talk about getting away with everything, I'm not talking about people who won't force their kids to make eye contact or stop stimming. I'm talking about people who let their kids physically attack people and don't do anything about it, not even explain that you shouldn't do that. I'm talking about people who never made their kid apologize for hurting someone, ever, even if their kid does have enough words to do so. I'm talking about people who ACTUALLY needed to discipline their autistic kid, not ``oh hey, my kid is acting autistic, I guess I should make them stop" but ``my kid is actively hurting people, I should probably do something about that besides just saying that she's autistic and not even trying to figure out why it happened or explain why she shouldn't do that."
When I talk about getting away with nothing, I'm talking about not even tolerating levels of quirkyness that would be OK if the kid were neurotypical.
Neither one of these approaches really works. Just putting that out there.
What should work is something along the lines of ``I'm going to educate my kid, and I'm going to help them be better at being autistic, and I'm going to help them understand which things they really do need to do in order to not actively hurt people, and I'm also going to help them understand what probably is and probably is not autism related, and I'm going to let them stim all they need to."
That seems to be pretty rare, though. I think we should do something about that.

Friday, July 27, 2012

Can you guys keep disability out of the abortion discussion?

Trigger Warning: Rape, Ableism, Abortion, and probably Eugenics

At a pro-choice rally of some sort, there was a woman holding a sign that said that an autistic woman who was raped should not be forced to give birth.
Why is autism brought into this?
Does that mean it would be OK to force a neurotypical woman who was raped to give birth?
What if she was neuroatypical, but still not autistic?

I don't think it's OK to force any woman to give birth, and I don't think restricting that statement to cases of rape is practical. I mean, how would you PROVE that you were raped? How would someone go about PROVING that you weren't? We live in a society that seems to like victim blaming and claiming that it wasn't really rape, so I don't want to go anywhere near that.

But that's not the point. They didn't make any of the arguments about how forcing a woman who was raped in general should not have to give birth. They didn't make arguments about bodily autonomy, about self-determination. They didn't talk about how illegal abortions is the result of banning abortion. They didn't talk about how fixing rape culture and giving actually useful sex ed would reduce the demand, so the same people who are demanding that abortion be outlawed are the same ones increasing the demand for it. They didn't talk about how fixing the adoption system would lead to people being more likely to consider it a viable option. They didn't talk about the difficulty involved in showing that an abortion might actually be medically necessary.

They talked about autism.
So, why specifically autism?
We know that autism is largely genetic. We know that people tend not to recognize that autistic people actually can and do understand what is and is not in their own best interest. We know that people tend not to realize that autism is not the end of the world, and that an autistic person can (gasp) consent to sex and choose to have a baby.

That means that my suspicions are not exactly favorable.
I think that autism was brought into this because:

  • They think the only way an autistic person could become pregnant is through rape.
  • They think that autistic people should not have children.
  • They think that autism is a tragedy and needs to be fixed.
  • They don't realize that they are, in fact, infantilizing autistics when they make this argument. 
And these are some problems I think it can cause:
  • People will assume that any pregnant autistic woman must have been raped. 
  • People will assume that allowing a pregnant autistic woman to have her baby is akin to forcing her to do so.
  • Then they will try all kinds of coercion to force autistic people to get abortions because of this.
  • They probably won't even realize it's coercion.  
  • People will continue assuming that autistic people can't make their own decisions.
  • People will therefore continue to not let autistic people even try making their own decisions.

Thursday, July 26, 2012

Seriously guys? (PFL)

There is no general consensus on how to describe autistic people/people with autism/autism spectrum folk, though surveys suggest that "autistic person" is preferred by a large majority. Understanding this is step one. Step two is realizing that we live in a society that is really bad about giving people with disabilities any sort of self determination at all, especially people whose disabilities are developmental. Autism is one of these. That means autistic people are going to be extremely touchy about anything that even smells like taking away self-determination, and not respecting language choices is one of those things. We have our reasons. And guess what? The more someone has had self-determination taken away from them, the more likely they are to be on guard if someone tries it again. That means that some people are going to care more than others. So how do you get it right?
  1. If the fact that we are autistic is not relevant to the topic at hand, we might not want it mentioned at all. Respect that. We have the right to at least TRY to pass if we so choose. And you'd be surprised how much can pass for ``just weird," especially if you have enough other privileges or enough autism stereotypes that you break. On top of that, I'm fairly sure that only the autistic person themself can legally disclose unless they are a) a minor, in which case their guardian can, but really should listen to the persons wishes on this or b) the person/their guardian has given you permission to do so.
  2. Many autism organizations (looking at you, Autism Speaks. I know for a fact that you do this) will insist on person first language. That's calling people ``people with autism" instead of ``autistic people." That's actually the norm for the disability rights movement, but within autism specifically, there is not a consensus on person first language. The majority of the actually autistic seem to prefer NOT person first language. And you should respect that. You should also respect those people who do prefer person first.
  3. If someone tells you their preference, they do not also have to tell you why. You just have to go with it. (They can tell you if they want to, which is different from "if you are really really curious.")
  4. Fourth thing: Some people just aren't going to care which you use. It probably won't happen that often, but in that case, it really doesn't matter. In that case, go with whatever the majority of autistic people in your audience prefer, followed by audience in general if there is a tie. (On the internet, that large majority of autistic people who prefer autistic person are the audience autistic majority.)
  5. Fifth thing: The opinion of the autistic person you are speaking about overrides ALL other opinions in how they should be described. Period.

Wednesday, July 25, 2012

On labels

I've covered the medicating thing. Now for the question of labeling at all.
Me: I spent YEARS avoiding an official label, because that stuff about people being imprisoned by labels? Guess what. People can and do totally use labels to imprison each other. Sometimes people even internalize that. Having a label is a HUGE problem when people will do that with your label. But... once I was an adult, and in control of my own life to an extent that if someone tried to imprison me with the autism label, I could fight back, certainly exit the situation, and possibly even outright win? Once no one but me could easily disclose it and have the ability to prove it if need be? Yeah, at that point I figured it was safe, so I went in to see if the label I thought I had was accurate. It was. And I use it to describe myself, because it's accurate.
I work with my label, not against it. That doesn't mean I let it dictate my life. It means that I don't beat myself up over the occasional failure to pick up on social cues. It means that I don't worry about this perseverating thing. It means that I bring a stim toy with me so I can concentrate better. It means I use my pattern recognition to my advantage.
Not everyone can do that. Some people think that labels are inherently imprisoning. For them, maybe they are. It's their decision whether or not they want a label. Not mine.
Just like it's my decision whether or not I want a label. Not theirs.
They don't get to use misunderstood science to try and prove that my label is invalid and think I will listen. If they put it as something I should accept, they can deal with my taking down their logic hole by hole. You know, one of those things that being autistic probably helps with? Yeah, that.
Basically: Don't mess with my choice about labels, and I won't mess with yours. 

Monday, July 23, 2012

On medicating everything or nothing

The society we live in is often obsessed with labeling everything, and with having a pill for everything. There are lots of problems with the way we handle this. Someone doing their research on what might help with the problems they are having, finding a label and a medication that fit and help, and deciding it is the best thing for themself is totally fine. I have no issue with that. Really. And if you'd rather use introspection and holistic methods and stay far away from labels, and that works for you, that's totally fine to. I have no issue with that either. Really.
It's when you start pushing everyone else to have the same opinion and choices on labels and medications that you have that I've got a problem with it.
It's when you misinterpret the science behind mental differences to prove your opinion that I've got a problem with it.
It doesn't matter which opinion you have: If you do those things, I will call you out. Especially if the person you are pushing is a kid who can't fight back, and you are willing to call child services on the parents if they decide they agree with their kid.
Sometimes medication helps. Sometimes it doesn't help. Sometimes it hurts. Do your research. Be willing to try something else if it doesn't help. Be willing to try it if nothing else works. Whatever. Don't shame people who find it to be the best thing. Go right ahead and judge people who use it to abuse others, chemical restraints on others, that kind of thing, though.

Sunday, July 22, 2012

My decision, not yours

So, I assist a math class online. Essentially, I'm a TA in an online classroom. One of the awesome things about an online classroom is that no one can see me stim, though I suspect that my employers wouldn't care if I were flapping away while writing on a whiteboard, as long as it wasn't with the writing hand. This just means they don't even need to know. I was at someone else's home, though, and my laptop wouldn't connect to the internet on the Linux partition, and the classroom crashes on the Windows partition, so I was stuck. The person let me use their computer (YAY nice people thanks!) for this, and that was pretty awesome. Up through here, life is winful.
Then, during class, I was flapping, because hey, I stim. When I'm trying to help people with math at an hour when I'd normally be asleep, I don't have the spare energy to do that AND suppress stimming. She grabbed my hand. I gave her a ``What on earth are you doing?!" look. (I don't know if that registered, since my body language is a little odd. But that's at least what it was supposed to be.) And this led into a discussion of stimming. She spent a lot of time making sure I was aware that I have a choice, that I can choose to not stim, and trying to tell me that I don't usually come across as strange, but that people will find that strange. My responses, point by point:
  1. Yeah, I know I can choose not to flap. No, I can't really choose to supress all stimming for very long, but I could choose to stim in a less obvious way. But trying to redirect one form of stimming into another or suppress it completely both take non-zero energy. Maybe I'd rather put my energy into something else, like my JOB. 
  2. I am also aware that I can choose TO flap. And that's what I'm doing. Seriously, why is that not the obvious choice?
  3. You're flat out wrong about my not otherwise coming across as strange. In high school, there were precisely TWO non-complimentary words people used to describe me: crazy and weird. No one insulted my looks. No one insulted my intelligence. No one specifically called me unfeminine, even when I joined tenor bass choir, joined a team where I was the only girl, or auditioned for a bass solo in front of the entire chorus. No one made a big deal of any of the specifics. They just left it in the catch-all of weird/crazy, because there were just SO many things. Flapping might let people figure it out a little quicker, but that's it.
  4. And what's wrong with strange anyways? Oh yeah, just that we're obsessed with normal, no matter how much we harp on diversity and individuality and all those other buzzwords. Well, maybe I'm just too strange to care about that, and maybe I'm happy being strange.
  5. Go read Quiet Hands. Stop trying to suppress stimming. It shouldn't be shocking and strange for me to use my body the way it comes naturally to me to do.

Saturday, July 21, 2012

A list of things that ``parenting an autistic child is hard" does and DOES NOT make OK

Trigger Warning: Abuse/murder of autistic people

So: I actually do understand that parenting an autistic child is hard. There are even things that this fact justifies. Here's a list of some things it justifies:
  1. Admitting that it is, in fact hard.
  2. Seeking services that will help your child navigate a world that isn't really designed for him/her.
  3. Asking for and receiving help.
  4. Getting a break once in a while, just like the parents of a neurotypical child do.
  5. Meeting with other parents to know that you aren't alone.
  6. Going on the warpath against any therapist or school that tries a therapy that makes your child's life worse. You aren't the point of it, but it will help you since those therapies will also make your life worse.
  7. Grieving for the neurotypical child you did not get, as long as you do so AWAY from the autistic child you do have and don't let it color your interactions with the child you have. Same as if you had twins and one died in infancy: You get to grieve, but don't let it mess with your relationship with the kid you HAVE.
  8. Calling people out on things that are just going to make your child's life harder. (Helps you for the same reason as the warpath against schools does: If your kid is being hurt, your kid is going to have adverse reactions that make your life harder too. Making your life easier isn't the point of doing this, but it is a side benefit, at least long term.)
And here are some things it DOES NOT and NEVER WILL justify:
  1. Abusing your child. 
  2. Killing your child.
  3. Depriving your child of the tools needed to communicate. (Translation: If your kid uses an iPad to talk, you can't take away the iPad. Ever. If you know how to lock it to the program that they use to communicate, that could be a viable option, but you can't take the iPad.)
  4. Silencing autistic people who disagree with you. They have legitimate reasons for disagreeing, and even if they don't convince you, you don't get to try to shut them up.
  5. Speaking about your child as if he/she does not understand what's going on, calling them broken, calling autism a bad thing.
  6. Actually, most of these fall under abuse anyways. So I'm gonna just go with silencing, abusing, and killing autistic people are all no-nos.

Thursday, July 19, 2012

I don't trust people who paint there kids as tragic because you could paint ME that way if you really wanted to.

Look at me spin around barefoot on the grass. Adults don’t do that, and yet, I am. Isn’t it so tragic? Look at me flap my hands to express myself. Isn’t it tragic? Look at me perseverate on math and four leaf clovers and anything pattern related. Isn’t it tragic? Look at how I can’t handle loud noises or strobe lights, at how I can’t wear leggings, stockings, tights. Isn’t it just so tragic? Isn’t it such a tragedy that I have very few friends, that I rock, that I will listen to the same song 50+ times in a row?

Except… that’s an outside perspective, one that has already decided that I must be tragic, because I am autistic. Mine? Try this:

Look at me spin around barefoot on the grass. I don’t care that “adults don’t do that”  because it’s FUN. Look at me flap my hands to express myself. It’s a whole other language, in a sense. Look at me perseverate on math and four leaf clovers and anything pattern related. It’s why I have trophies from math competitions, why I’m studying math and engineering now. Look at how I can’t handle loud noises or strobe lights, at how I can’t wear leggings, stockings, tights. I guess that means clubbing is out, but then, I’d rather do more math. I guess it means I need to dress comfortably, too, but then, don’t you wish you could? Isn’t it AWESOME that I have a very few close friends who accept me for who I am, that I rock, that I will listen to the same song 50+ times in a row and not get sick of it?

What I’m doing, what I can’t do, what I think is interesting, is the same for both of these. It’s just that one is an outside perspective that is determined to find me tragic (perhaps to get more money or to make it seem OK to end my life) and the other is the inside perspective, the one that says “Yeah, you guys don’t make sense, so I’m gonna do my own thing and have fun doing it.” Let me do so, and we’re cool.

Tuesday, July 17, 2012

Oh hey, 100 posts

Google tells me this is my 100th post. (Round numbers are cool!) This blog started because I felt like I was going to explode from some of the opinions people were expressing about people I have a decent bit in common with, and about people who have other disabilities. Since then, I've seen things that made be want to rage and throw things (like every time I see someone support Autism Speaks), things that make me happy (like whenever someone understands why XYZ is/isn't helpful, and then either does/stops doing it, respectively), and things that made me laugh. (Like THIS. Go read it. It's funny.)
I've had awesome stuff happen, like getting paid to perseverate and filing to graduate from math, and I've had cruddy stuff happen, most of which I don't talk about here unless it's related to autism. So for everyone who's stuck around, thanks for reading, and I'll be sticking around too. If I didn't, the crud in my head would build up and then I'd explode or something.

Monday, July 16, 2012

Another poem...

So, once again for that literature class, we were supposed to write a poem to a parent. Here it be:
Don't Feel Bad
Don't feel bad about what you couldn't see
When no sign stood alone,
When knowing may well have been worse.

Don't feel bad about when you denied
What no parent would want to see,
What still absolutely was.

Don't feel bad about what you couldn't prevent
What was wrong,
What still had to be.

I know.
You want to feel bad.
But think about it.

Would it have been better if you'd known?
Assuming, of course, that you'd reacted as most would.
No.

Could you have helped?
Perhaps, but they would have hurt more.
If they'd known, it wouldn't have been abuse, but therapy.

So that's it.
I'm glad you couldn't see.
Don't feel bad.

Sunday, July 15, 2012

Quiet Hands Response Paper

Trigger Warning: Abuse as therapy, ABA, Quiet Hands

For my literature class, I had to write a response paper on, well, pretty much any ``text." I wrote about Quiet Hands.
My response paper is the kind of cruddy hurried thing that most of my papers for English classes honestly are, but I figured I'd put it up anyways because I just haven't been writing that much. Here it is:


     Julia Bascom's ``Quiet Hands" resonated when I first read it. A friend of mine, also autistic, sent me a link to the poem. I read it. I cried. ``The literal meaning of the words is irrelevant when you're being abused. / When I was a little girl, I was autistic. And when you're autistic, it's not abuse, it's therapy" (11-12.) Of course, Julia does not agree that it's not abuse, but therapy. It's just what other people think about the therapy, where they teach her to have quiet hands, that is, to keep her hands at her sides, not to fidget, not to flap. Being able to sit still is useful, of course (and something I still can't do, partly because no one figured out that I am autistic early enough to abuse me that way,) but she doesn't think it justifies the methods they used, including that ``they held my hands down in tacky glue while I cried" (1) and ``held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleased and screamed" (5.)      Here, she is showing specific examples of why holding the hands of an autistic person down is actually a pretty horrible thing to do. Sure, they're less distracting to anyone else, but you just might be causing legitimate physical pain while you do it, and not at the level of the loud rather than hard slap that many parents still use when their child misbehaves.
     I really think that showing that point, that the quiet hands taught to autistic kids is actually abusive, is the main point of this text, though getting through her own feelings on the subject is also likely a large goal, considering that the specific examples I have cited so far really did happen to her. Even with no one having had more of a weapon against my flapping than turning a blind eye to the kids who bullied me about it, and occasionally making fun of it themselves, I know how I feel about it. (That's all they had because, technically, it's not against the rules to flap or rock unless you have an IEP or ABA plan that says you need to work on that. All my weird was chalked up to giftedness, which, while true, is not the whole picture.) I give their missing the part where I am ALSO autistic, not just smart, credit for the fact that I am still comfortable flapping when I want to. See, I'm well aware that for some, ``you might as well be flipping them off when all you're saying is this menu feels nice"(22.) I know full well that ``I need to have quiet hands" (45,) at least according to the rest of the world. Like Julia, however, who is the speaker in her own poem, I don't care. And unlike Julia, my education could only ever glance at my loud hands in passing and make a quick effort to hush them, which is nowhere near enough to convince me.
``I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me" (43.)
     That's what they are trying to convince her of, what they are trying to convince every autistic child of when they teach quiet hands, and what they would probably try to convince me of if I ever tried to get help with any of the actual problems I have. There's a reason it takes abuse to do it.
      In two places, she mentions similar treatment being given to others. One is a seven year old who had a special chair with straps to tie his hands down, which his old school distric had used. She threw the straps away. The other is a child in a supermarket, excited by one of the displays. His mother notices, and reminds him about quiet hands, looking rather embarrassed. ``I catch his eye, and I can’t do it for myself, but my hands flutter at my sides when he’s looking. (Flapping is the new terrorist-fist-bump)"(49,) is her response to this child. She sees people trying to enforce the same guidelines that were enforced on her as a child, and she fights it in the small ways she has available to her: throwing out the straps that are used for one child, flapping when another child is looking, and of course, writing this text. (Calling that last one small is debatable, however, considering that it then proceeded to go viral. Sometimes the internet can be very useful.)
``I wish everyone could look at my hands and see I need you to slow down or this is the best thing ever or can I please touch or I am so hungry I think my brain is trying to eat itself " (20.)
      Despite everything she has been told to the contrary (``Behavior isn’t communication. It’s something to be controlled"(33) and ``Flapping your hands doesn’t do anything for you, so it does nothing for me"(35,)) where she is now speaking in the voice of her therapists, behavior IS communication. She knows what her hands are saying, and her sister knows what her hands are saying, so clearly someone can read her flapping. But if they see her flapping, they do not understand. It's a language they do not speak, and it makes them feel unsafe. So they make her unsafe when she flaps. I've been there. As she found, so have the rest of us found- very few people can read flaps. There are happy flaps and frustrated flaps and flaps that mean that I'm trying to think of a word that's right on the tip of my tongue and I can't come up with it. There are flaps that mean I'm scared and that whatever it is that scared me is BAD and needs to go away. Because however verbal I might normally seem, when I'm scared, I'm not. At the end of the day, speech is not the only way to communicate. Behaviors like flapping and rocking MEAN something, and Julia knows it, just like the two other kids she referenced in the poem know it. But... ``Someone who doesn’t talk doesn’t need to be listened to" (31.) Again, she's saying that yes, she know's. She knows that's what's taught. But you can tell she doesn't agree. And neither do I.
      To some extent, writing this poem was an act of rebellion. What came after the poem went viral was an even bigger, more organized act of rebellion against a system that thinks the most important thing is to make those who are different seem normal, no matter the cost.
``Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you… " (50.)
     She is equating those actions. And she is rebelling. That's where the Loud Hands Project came from. That's what nearly everyone who argues against Applied Behavioral Analysis cites. That is as spark that set a huge part of the autistic community on fire, and that is a powerful text.

Saturday, July 14, 2012

What? Just WHAT?!

Trigger Warning: EXTREME Ableism, presumptions of incompetence

I can't believe someone said this, and neither can they. Apparently if you need services, you do not have the right to sit on a panel about how to handle the disability you need services for, because you just need to take whatever the taxpayers think a cure is. Here's the thing: Taxpayers who want to cure something tend not to have any idea what scientifically could or could not be related to the thing they want to cure. Disabled people do tend to know, because keeping themselves safe requires knowing everything they possibly can about their disability.
Also, why are we assuming that worth is directly linked to the myth of independence? Oh, and does their argument mean that I can still refuse treatments? Because I don't pay specifically for the counselor I have at college, but said counselor is not BECAUSE of my being autistic, nor is it done through disability services. In fact, disability services doesn't even know I'm autistic, partially because I don't want to deal with anyone who might have that kind of opinion: There are exactly THREE teachers on campus who know: One I told when I melted down abroad on a trip he was running, one put the pieces together and asked, and one because I wrote my ``response paper" about ``Quiet Hands."
But seriously? That reaction specifically about my own situation might give the impression that I think there is some HF/LF dichotomy- it's supposed to be making the point that even the person who they might think is completely independent, really isn't. And if the taxpayer thinks about it, neither is he. So maybe he doesn't get to sit on a board about education, which is meant to cure his ignorance? And he doesn't get to sit on a panel about the road systems, which cure his lack of transportation?
Anyone who argues that you don't get to have an opinion and enforce that opinion on your own life because you are too involved in the subject needs to think about what that would mean if it were applied to other areas of their own lives.

Friday, July 13, 2012

And where did THAT come from?

I don't know if anyone else has noticed this pattern yet, but poetry-ish stuff comes out when I'm angry or scared or both. ``Empathy" came about (no names here) because someone, after my making it very clear (as in ACTUALLY SAYING IN AS MANY WORDS) that I don't think she's a bad person for disagreeing or anything like that, but that she has made some faulty assumptions about other people's experiences, but that you CAN'T assume that someone is high functioning because they can type, or that they only dislike Autism Speaks because they are blessed. I even cited sources. I named one person and linked to the blog of another who are just as severely autistic, both non-speaking and at least sometimes facilitated communication users, who dislike Autism Speaks even more than I do. She assumed that her moderate to severe group could never advocate for themselves, and said how blessed I was to be able to think and learn. No. I am blessed that there are ways available to be that allow me to show that I can think and learn. It is NEVER safe to assume that someone cannot think or learn. NEVER. And I explained why. And she outright denied it. And she insisted that we were disagreeing for the sake of disagreeing (we weren't. I was disagreeing because she was making assumptions that, while SHE may not see those people as less human because of the assumptions, other people will, and there is certainly no hope for self-determination in any form under those assumptions.)
In the end, I figured that her not considering people less human when assuming inability to think was enough, and that for any given person, either that or refusing to make that assumption would be enough to keep them from intentionally harming another, at the least. (Unintentional harm is still a MAJOR problem, but I was trying to make some peace here.) And she responds to that by saying that it reinforces her opinon that a human rights and anti-bullying platform is needed.
Logical fallacies much?
It's pretty hard to give human rights to someone you don't believe can think. It's pretty hard to support Autism Speaks and be anti-bullying, considering that their supporters regularly bully autistic adults, including death threats. It's pretty hard to reconcile human rights, anti-bullying, supporting Autism Speaks, and silencing every autistic adult who tries to explain why those things don't actually fit together BECAUSE they can think for themselves.

Thursday, July 12, 2012

Empathy

Trigger Warning: Abuse/murder of autistic people, Ableism
Oh, and I explained where this came from here


For you, it's about the good they've done, what of it there is.
For you, it's about raising awareness.
For you, believing what they say about those who disagree is easy, safe.

For me?

I know it will be life or death for someone like me.
Not think. Know. It already has been, too many times.
It could be MY life or death, some day.
For me, it is not safe,
And that can never be forgotten.

There is fear.
Abject terror that you might be the next to kill
When you tell me how blessed I am
To be able to think for myself.
That someone else might hear you,
Someone who thinks being unable to think makes one less human,
Makes it OK to abuse, to maim, to kill.

You dismiss my fear.
You say that YOU don't think inability to understand makes people less human,
That YOU don't think inability to think makes people less human.
That's great, it really is.
But what of the people who DO think that,
the people who might hear you.

And that inability to understand, to think?
It's been assumed before.
Of people who were abused for it.
Of people who were killed for it.
Of people with more to lose from their ``help" than I do.

Because unlike you,
They cannot pretend that this is a safe discussion.
They know it is life or death.
More likely theirs than mine,
And so more vehement their anger.

My tame fear, my restrained anger?
That's too much for you?
Try for some empathy before claiming I have none.

Wednesday, July 11, 2012

My take on Person-First Language


So, since someone is bound to ask why I call myself an autistic as opposed to a person with autism (or to insist that I switch, which isn't going to happen,) here is my take on person first language/identity first language/whatever other language there might be: I know what I prefer to be called, and you should call me the way I prefer. I prefer to be referred to as an autistic or an autistic person. I do this because ``person with" implies that I could also be a ``person without," and I would be a different person if I weren't autistic. I also wouldn't take a cure if it existed. (If you had something that would take out the sensory issues but leave the way I think alone, I'd take that in a heartbeat. But I wouldn't give up the rather awesome way my brain works in order to dump the sensory issues.) So I will call myself autistic, not a person with autism.
That said, if you prefer to be called a person with autism, a person on the autism spectrum, or to not have the autistic identity mentioned at all, let me know and that's what I'll do when describing you. Because the whole person-first language thing was described to me as being about respecting the person. Thing is, if person X says ``No, Y is not how I want to be described. I identify as Z," then even if the point of Y was to be more respectful, the way to be respectful of person X is to call him or her Z. This applies to ALL identity issues. So respect my choice, and I'll respect yours.

P.S. Yes, I've heard that the person-first language is actually to separate the disability from the person, and I don't know if it's the case. It also doesn't invalidate the most important part of my argument, namely that the respectful thing to do is to refer to a person the way he or she asks you to, even if you have been told that is the ``wrong" term to use.

Monday, July 9, 2012

Sometimes we don't want you to say something because that something has been used as justification for killing us.

Trigger Warning: Discussion of ableist terms and dehumanization of disabled people.
``You have the rights to safety and security person, not freedom of offensiveness. 
Whine about real problems and maybe persons with disabilities will be treated with equal dignity and respect able-bodies persons, don’t just police language and expect social change to happen because of a minor choice in adjectives. "
 If they had said ``Whine about real problems and we'll fix them," it'd be at least a little better. But requiring that we complain about things you think are worth complaining about in order to get basic human dignity and respect? I don't think so. I think you need to check that privilege. You have the physical ability to call people stupid and retarded. I know. You even think that it's just offense. I know. Here's the thing: When you use retarded as an insult, you also say that being retarded is inherently less. That's reinforcing the idea that it's LESS HUMAN, and therefore less deserving of human dignity and respect. That's a problem. You are essentially saying that they're not really people, and that is tacit approval of treating them (and us) as not really people. You know what happens when a group is seen as not really people? All kinds of things become OK, sometimes up to and including killing them. And I am aware of FIVE autistics who have been killed THIS YEAR for being autistic, two of them toddlers and one not much older than that. Kind of like if you were a decent person, you wouldn't insult a person by saying that they aren't really a person and that it would be OK to abuse them? Well, that's what you're saying when you insult them by calling them a retard or by calling them autistic, given what people are doing to both groups.
And if you want me to whine about real problems? Ok, I'll whine about the fact that PEOPLE KEEP KILLING US and then OTHER PEOPLE EXCUSE THIS BECAUSE WE ARE SUCH TRAGEDIES and then YET OTHER PEOPLE SAY WE DON'T DESERVE DIGNITY BECAUSE WE GET ANGRY ABOUT REINFORCING THE LANGUAGE THAT THE PEOPLE MAKING EXCUSES USED. Real enough for you?

Monday, July 2, 2012

I read the comments...

So, I am friends with the person who writes Autistic Hoya. I read everything (yes, EVERYTHING) that she writes, but not usually the comments. For her most recent post (about saying no to autism speaks) I did read the comments. It was actually mostly OK. There was one person who assumed that it was just the ``high functioning" autistics who don't like Autism Speaks, which is patently false, and one person who accused autistics who don't like Autism Speaks of trying to speak for all autistics (not so much, just complaining when people who aren't autistic insist that they can...). But mostly? I think the people who actually support Autism Speaks and people who read self-advocate blogs have fairly few people in common. It's hard to listen to the legitimate concerns with their organization, understand that yes, we have fact-checked on those concerns, and still support them, so if any amount of logic will convince someone, they won't support Autism Speaks for long after starting to read self-advocate blogs. So maybe we should just get EVERYONE to read them? Make ``Don't Mourn For Us" required reading while we're at it? It would at least help with the assumptions that not liking Autism Speaks does not automatically imply being ``high functioning." Might even help with the dumping of functional labels, since they don't REALLY help anyone.