25 January, 2012

purple ears

I think autism is a real thing, mostly because I seem to have a lot in common with a lot of other people I know who were diagnosed with autism, especially people who were diagnosed when they were kids. So I guess what I mean is that I think there is a group of people who have a similar disability and often get the same label. But because most professional opinion on autism doesn’t really relate to what my actual disability is like, I kind of don’t think autism is a real thing, at the same time.

It’s kind of like if most gay people had purple ears--not necessarily their whole life, but at some point, maybe when they were a kid. Some gay people would have purple ears their whole lives though. Some gay people would only have purple ears for a minute and it would be hidden under their hair. A few gay people wouldn’t have purple ears ever.

I can see why professionals might get very focused on studying why some people have purple ears, and even why some people might find it important to their identity, and I can even imagine going around and using “purple ears” as a synonym for being gay, especially if being gay took a long time to explain--but this doesn’t mean that purple ears are actually the important thing that’s going on. Being gay is what’s actually going on, and it’s what people with purple ears have in common that’s more permanent and important than the color of our ears.

(Purple ears equals diagnosis of autism or maybe more specifically the kind of surface attributes that lead someone to get diagnosed with autism.)

17 January, 2012

I was just thinking about when my dad will touch me in ways I don't like to be touched like putting his arm around me or putting his arm on my back. Without having a clearly defined rubric, I guess my deal is that with most people, what I want from physical contact is something brief--really tight hug and let go, squeeze hand and let go. I don't like to have to go a long time with someone's arm around me, especially if they are bigger than me.

Sometimes I have just sat in movies having my enjoyment of the movie dampened by my dad's arm on my back. Sometimes I have managed to come up with excuses to move away supposedly to do something else but really just to get away from contact. And sometimes especially lately I just immediately move away, stiffen to an extent that my dad can't ignore, pull my shoulders in away from his arm, or shrug him off. When I do those things, it's obvious that I am saying NO.

What I think is interesting is that when I do things that say NO, a)my dad looks offended, and b)my mom tells me, "That was mean."

Even though I am disabled and a woman and those are two groups of people who aren't supposed to say no to touch, I don't really think this happens because I am disabled or a woman, I think it's really normal. But it's kind of messed up and I think people should think more about touch!

Should someone have to accept touch that they don't want, especially for a long period of time? Is it mean to display nonverbally that you want someone to stop touching you? I don't think so.

11 January, 2012

The Loud Hands Project

hi guys, it's time for the Loud Hands Blog Tour! are you ready?

The Loud Hands Project is a project by the Autistic Self-Advocacy Network, which is being organized by Julia from Just Stimming. You might have seen the video:

(The YouTube page for the video has a visual transcript in the description section. If you can watch the video but don't want to watch it with sound, it still makes sense with the sound off.)

Julia describes Loud Hands as a transmedia project. Transmedia is a word I was not familiar with, but according to Google it means "storytelling across multiple forms of media," which sounds pretty good. The idea as far as I can simplify it is to communicate the pride of Autistic people and support Autistic people in communicating their own experiences, but there are other facets too and Julia describes her aims much more clearly on the fundraising page for the project.

Loud Hands is trying to raise $10,000 for the launch of its website and its first anthology (if you're thinking of submitting to the anthology, you can learn about that here). $7,500 has already been donated, but they still need to make their goal by March 15. As soon as my theoretical job starts I plan on donating a LOT, and if you support the project and can spare the money, I hope you'll consider donating as well. Even if you are only able to donate a few dollars, it still makes a difference.

If you're not able to donate but you have autism, I still really hope that you will think about contributing to the Loud Hands website, and to this or future Loud Hands anthologies. Whether or not you have autism, please try and support the project by telling other people about it who might be able to contribute money or communication.

No matter what you do, please try and live with loud hands at all times.



a pair of feet in flowered doc marten boots, standing on tiptoes

(and loud feet)

10 January, 2012

Every few days I think about camp and it starts taking my head apart.

Not because of the stuff relating to ableism and me being disabled, but just because I am not going back there, and can't ever go back there.

This man is an amazing person, who I had the incredible luck of knowing for two weeks, and then for two weeks again.

an older white man with Down Syndrome, smiling

I will send him letters, because letters are important to him, but I know that he won't associate the name on the letter with me, even if someone tells him the name of the person it is from.

One time he made a drawing and when other staff asked if it was for Amanda, he said no like he was offended, and then he gave it to me and looked at them as if to explain. He's not necessarily an easy person. He is himself. A lot of things make him angry and it's easy for him to feel that people don't care about him if they don't talk to him or write him letters.

I don't understand his speech, so there's a lot I don't know about him. I did understand when he told me his mother was dead.

I used to have the idea of sending him letters with photos in them, but I feel like it's too late.

07 January, 2012

I got some really good spam, and although I am removing them from their comment threads I thought you might enjoy them.

I am posting this can be due to the fact I would want to thank my good friends for getting close to when stuff had been truly bad. I have played the online games especially the wow for a long time and I have some good suggestions for everyone to get the best.

Being authorized of or obtaining the elements that people want is linked to not becoming anything that people are; so, developing up, we bury component of ourselves.

How can we get the best RS Gold,through the internet or the players in the game? Can we Buy RS Gold with cheap price or other ways else?

what about individuals who had been taught that becoming an indistinguishable was the 1st factor they should certainly want? How can we Buy Cheapest WOW Gold through the internet?

I can't inform you what form of peace of thoughts that is. Even once the reality they inform isn't a fairly or pleasant one.

Touching somebody else isn't a God-given appropriate so for people who touch somebody plus they proceed their entire body aside from you--what can we do when we have many boring free time? How about try to get access to the online games? When we talk about the game, we need to talk about the WOW Gold. As the WOW is the world's most famous online game, all of us knows that we have to get the Cheap RS Gold to save money.

05 January, 2012

This used to be one of my favorite songs when I was little (which is kind of creepy in retrospect, but whatever) and it occurred to me that it has some relation to things I write about in this blog. Like I've said I think sex is a pretty good microcosm of all the feelings and relationships people try to define and make rules for, and one of the best examples of how much those rules can hurt people. So, have fun, while I work on my post about how everyone is severely disabled in their own mind.

asked my daddy when I was thirteen
"Daddy, can you tell me what love really means"
his eyes went glossy not a word was said
he poured another beer and his face turned red

asked my mother, she acted the same
she never looked up, she seemed so ashamed
asked my teacher, he reached for the cane
he said "don't mention that subject again"

read about love, I read it in a magazine
read about love, cosmo and seventeen
read about love, in the back of hustler, hustler, hustler

so I know what makes girls sigh
and I know why girls cry
so don't tell me I don't understand
what makes a woman and what makes a man
I've never been to heaven but at least I've read about love

my big brother told me when I was fourteen
"it's time I showed you what love really means
girls like kissing and romance too
but a boy's got to know what a man's got to do"

he gave me a book, the cover was plain
written by a doctor with a German name
it had glossy pictures, serious stuff
I read it seven times then I knew it well enough

read about love, now I've got you
read about love, where I want you
read about love, I've got you on the test-bed, test-bed, test-bed

so why don't you moan and sigh
and why do you sit there and cry
I do everything I'm supposed to do
if something's wrong it must be you
I know the ways of a woman, I've read about love

when I touch you there it's supposed to feel nice
that's what it said in reader's advice
I've never been to heaven but at least I've read about love

02 January, 2012


I know this isn't an interesting post, it's probably my 100th post on the subject. I try to avoid even reading about this stuff because no one cares. But I quit tumblr, so sometimes I have to say boring emotional stuff on my regular blog.

1. It's so dumb to think that listening to PWD aside from your own kid means that you have to obey and agree with everything they say! PWD don't even all have the same life experiences or opinions. Why don't you just treat people with disabilities like people with disabilities who might have something to say that is important and, even if they don't, don't deserve to be personally attacked?

"But I didn't personally attack anyone!"

Oh yeah, I've heard that before...too bad Ability Statements Are a Personal Attack! There's no way you would be into it if I started making assumptions about your kid or your life so why do you think disabled people should be all calm about you doing the same to us?

No disabled person wants a bunch of parents following them around and obsessing over their lives and worshipping them. Well some people do, but they're famous and they try not to talk politics because it might distract from the worship. You're not talking to those people, you're talking mostly to some really young/not-famous people with disabilities who don't want to profit from our disabilities but just want to be able to talk about them. We don't want you to agree with everything we say, we just want you to stop being disrespectful and acting like we're not even here.

This is especially annoying when used as an origin story, like, "I used to believe everything that disabled people on the Internet said, until someone told me that one person wasn't diagnosed with the disability they said they were diagnosed with, so now I don't believe ANY disabled people on the Internet." If you legit were believing everything all disabled people said AND prioritizing what they said over your own common sense and experience with your kid--instead of just listening to them like you would listen to any normal person, and thinking about what they said critically--well, why were you doing that? Why do we have to be always right or always wrong?

We're just OTHER PEOPLE, like you.

2. If I see the word high-functioning used one more time by someone who is claiming to be evenhanded...okay I'll probably have the same reaction as usual. Super big sigh, bad mood, usually avoiding a conversation with that person. That word just feels like they are stepping on other people and not even noticing or seeing why it's important.

3. It's not that weird that people from a certain minority group involved in advocacy would not be representative of everyone in their group. I remember someone (non-disabled obviously) making a comparison between gay advocates and Autistic advocates, and hastening to add, "except, the difference is not all Autistic people can do this kind of advocacy."

Yeah, okay, what about gay people who don't have the money or the mobility or the cognitive or emotional ability to participate in a certain kind of advocacy? Since we're always on the subject, what about gay people who have multiple severe disabilities? What about gay people who smear feces?

I would like to see mainstream gay advocates acknowledging gay disabled people more, obviously, but what I'm saying is I don't think you automatically have the right to discredit advocates just because they aren't a perfect microcosm of the community they are supporting. For example, people who can use the Internet independently, and read and type fluently, are more likely to be involved in blogging or having conversations on blogs. People who can use the Internet independently were more likely to find out about The Loud Hands Project and submit clips of themselves for the video. (According to one guy we all dress like "hipsters," and therefore don't have real autism. I'm still trying to figure out what people with real autism dress like? Probably guayabera shirts.)

I think it sucks that many kinds of anti-ableist advocacy aren't accessible to a lot of disabled people and I would like to change that. (I know that one of the goals of The Loud Hands Project is to do exactly that.) But I don't think, given the current lack of support, there is anything surprising when most disabled people who have anti-ableism blogs or attend meetings of disability rights organizations have certain abilities that make it easier (or at least possible) for them to do those things without support. It also doesn't mean they aren't severely affected in other areas, but no one cares about that, blogging is ~the most important thing in the world, ever.

4. Finally, just stop saying high-functioning! Again! It makes it impossible to talk to you because my head is going to DROWN in how annoying you are.

Especially if your kid is also "high-functioning" or could be classified that way, but for some reason you're neglecting to mention that. Maybe because you secretly sense what a shitty word that is to describe someone who's having a really difficult time! Or, maybe because you don't want to lose points in the argument. Possibly both! No one knows.

Like I said, this is probably the 100th post I've written on this subject and I swear to God, I don't think a single parent has ever read something like this and changed their mind and realized they were treating other people badly. Seriously. 100 posts. All bouncing straight back into my own mind.

If you have known me for a while, you probably remember my 2010 campaign to acquire a severe developmental disability by throwing myself in front of a FedEx truck before my 22nd birthday. Since I've missed the legal cutoff I would now have to throw myself a bit harder, or drink Drano, to get out the high-functioning deal. I know you think this is really insensitive and insulting to you and your kid, but try and think about WHY I would feel like that is a smart or reasonable thing to do. Because I really, really did feel that way.

A friend of mine recently described himself as "too disabled to work, not disabled enough to get disability benefits." If you think that kind of life situation is best described as "functioning," then you are a shit. Seriously. When I look at you, I don't see a person. I see a turd.

Of course I know you don't see anything when you look at me either!