as small as a world and as large as alone, differentblogtitle: butterflyinthewell: ...

10:29pm July 26, 2015

butterflyinthewell:

butterflyinthewell:

graymoonemoji:

I keep seeing people labeling Autism Speaks as a “hate organization” and it’s sexist because they’re promoting Autism Awareness with the color blue (and not pink), but it has NOTHING to do with gender oppression. It’s about supporting and understanding those with Autism and spreading AWARENESS.
Some of you need to do your research before jumping to conclusions. Stop believing every thing you read on the internet.

You’re the one that needs to wake up and listen to the people Autism Speaks is oppressing all the time.

Autism Speaks wants to DESTROY AUTISTIC PEOPLE. They cover it up with flowery language but that’s their aim.

They don’t have a single autistic person in any positions in that organization, they they claim to know what we need and try to speak for us. You don’t see gay rights organizations being run by straight people who want to cure homosexuality? Well that’s what Autism Speaks is. They hate autism and they dehumanize, exploit and misrepresent autistic people for their own financial gain.

THAT is why autistic people are against Autism Speaks.

We’re not random people trolling them for lulz. We are people trying to be heard over a juggernaut organization bent on oppressing us.

Seeing things lit up blue is a painful reminder that I’m seen as less and people want a giant portion of my identity removed in order to be “acceptable” to society.

Even nonverbal people are happy with how they are and don’t want to change.

Much of today’s negative rhetoric, stigma and stereotypes about autism come from Autism Speaks.

Reblogging myself to say the person who made the post I responded to personally messaged me to apologize and say the post was a long time ago and they’ve learned a lot since then.

Fellow autistic people, this is proof that we’re not speaking into an echo chamber. For every twenty people who ignore us, there is still one who listens. Every ONE who listens to us is so important and we should celebrate for them. Because one person here and one person there adds up over time! It’s still worth it!

Last night my roommate asked about me being autistic and she had a lot of questions and said a few ableist things (nothing too terrible, she was very open to learn) but when A$ came up, she immediately knew what was bad about it, and talked about the things she had heard. So people are learning. It’s becoming more common knowledge. We’re getting there.

Totally against Autism Speaks here, although I feel like they get too much attention sometimes. Like people notice they’re bad but don’t notice the other organizations that came before them (one of which merged with them) to make things this way, many people even think they originated the puzzle thing and they totally didn’t. It’s the autistic community with its damn five-year=long memory again.

But about “Even nonverbal people are happy with how they are and don’t want to change.“

That’s technically true in a sense – there are nonverbal people who are happy with how we are and don’t want to change.

But. Several problems with… kind of how that sort of statement works in a lot of ways.

Nonverbal people is not a kind of autistic person. Really there’s like… everything from 2% verbal to 98% verbal and a person can move around on that scale throughout their life. It’s rare to find someone who’s 0% verbal, and most people considered nonverbal (or functionally nonverbal) can speak some of the time somewhat, whether our speech is communicative or not.

On the other hand I do like to point out that lots of nonspeaking autistic people do want to remain autistic, just because some people assume we don’t. (I’m someone who – and this is an oversimplifcation still – went from at my best, 70-80% verbal to 2-5% verbal over the course of my lifetime, just so nobody gets ideas about my life story that aren’t true and then blames me for calling myself nonspeaking.) People always bring up nonspeaking autistic people when they want to talk about autistic people who would “obviously” want a cure.

But at the same time as I like to point out that yes, many of us don’t want a cure.

I also don’t like singling out nonspeaking people as if we’re a special group of autistic people. Because we’re not. We’re just autistic people who are less than some arbitrary amount verbal. (It’s not just 0%, it can be anything from 2% to even 30% probably, depending on the context, but rarely does anyone mean just 0% verbal people when they say nonverbal.

Although I’ve sometimes seen a double-standard where parents will tell a nonverbal person that because they can talk on rare occasions or because they used to be able to talk or because they have nonfunctional echolalia then they’re “not really nonverbal”, and those exact same parents will post videos of their “nonverbal” kids talking. And not see any contradiction there. I wish I was joking but I’ve seen this over and over. “Nonverbal” kids talking in videos, some of whom people watching the videos literally don’t notice them talking because they’ve already assumed that (a) they’re nonverbal and (b) nonverbal means speech never comes out of your mouth.

Nonverbal means speech rarely comes out of your mouth, or that what speech does come out of your mouth is either noncommunicative or incomprehensible to those around you. Or presumed noncommunicative. There are ‘nonverbal’ people who speak words very well (in terms of, they think words and those same words come out their mouths) but they either talk in a rapid breathy high pitched voice that sounds like they’re saying nonsense to themselves, or they can only pronounce vowels so all their words sound like squealing to people who don’t know them, or other things like that. And they’re considered nonverbal because people either don’t notice or don’t understand their speech or don’t consider it communicative even if it is.

So nonverbal is a weird category and I’ve explained that to death by now and it wasn’t even my main point about not liking what was said.

While the sentence is technically correct, it could give the impression that all nonverbal people feel this way. Which is totally untrue.

There are lots of nonverbal people who want to be cured. There are also lots of verbal people who want to be cured. And lots of semiverbal people who want to be cured. And basically, verbal skills are not what determines who wants to be cured.

Which I know is part of the point someone was trying to make by saying that there are nonverbal people who don’t want a cure.

But “there are nonverbal people who don’t want a cure” is a much clearer way of saying it than “even nonverbal people don’t want a cure”.

Of course a lot of online autistic people only interact with autistic people who don’t want a cure, and therefore get a really skewed view of how many autistic people don’t want a cure. It’s true that autistic people probably as a whole want a cure less than many other disability groups. But there’s still lots and lots and lots of autistic people who are not happy as they are, or who do want a cure, or both. And that’s okay. It shouldn’t be threatening to anyone, and it shouldn’t legitimize anything that Autism Speaks says or does supposedly on our behalf.

I liked the way an autistic person put it way back in the year 2000. A group of parents was having a rally about autistic people, without inviting any of us. (1) And one of the big purposes of the rally was to find a cure, and a lot of autistic people had a problem with this.

And in an email to one of the founders of the rally (in trying to explain to this woman what she should’ve done instead of steamroller over every autistic person who disagreed with her and then play the victim when we fought back), an autistic woman put it like this:

“You could start to compromise by recognizing that “cure” is so offensive to many autistics that it destroys any possibility of cooperation. You would need to clearly and unambiguously remove “cure” and “research” entirely from your agenda, leaving the issue a matter of personal opinion.“

Mind you – in this context, “research” meant “research into eradicating autistic people,” it did not mean “research in general” because I know the author of that letter and I know she supports genuine autism research done from a truly scientific perspective. She just knows that the research these parents were promoting was eradication and prevention research, and that this angered many autistic people.

But the part I agree with the most is “leaving the issue a matter of personal opinion”.

Because it is a matter of personal opinion. Some autistic people desperately want a cure and some don’t want one at all and some are somewhere in between. Probably most are somewhere in between. Certainly most of us have things about being autistic that we don’t like, even if we’re generally happy as we are. And that’s important too. But places like Aut$peaks don’t leave it up to personal opinion, they push a cure-dominated agenda in a way that’s damaging both to those of us who want a cure and those of us who don’t. They don’t really speak for any of us, whether we seem to agree with their agenda on the surface, or not. Even the autistic guy they hired for their advisory board (who was far from some kind of autism radical at the time and held very condescending views towards many other autistic people) quit when he realized he had no actual power to effect change within the organization. That says a lot about them, that they couldn’t even keep a guy who thought at first he basically agreed with them.

But yeah I think that autistic people sometimes get really hung up on the idea that all autistic people should want to remain autistic, or that we all really do want to remain autistic deep down unless we’ve been brainwashed or something. But that’s not true.

But it’s also not true that whether you want a cure is about how autistic you are. Every kind of autistic person – both real categories of autism and fictional ones (most of the official ones seem fictional to me) – has people who don’t want a cure and people who do. I’ve talked to people with Asperger diagnoses who hold jobs and are married and have a big social life who still want to be cured, and I’ve talked to people who have never spoken in their lives and only learned to type at a very late age who wanted nothing to do with a cure and find the entire idea offensive. Cure isn’t about who you are, it’s about how you think of who you are. And that’s a very important thing to get across. Because I don’t want to be cured, but there could be a person identical to me in every autism-related respect who desperately wants a cure. Acting like the desire for a cure is tied to what kind of autism you have, makes it sound as if we can’t even make decisions, like autism determines what we think of ourselves, and that’s a horrifying idea that I barely want to contemplate. I hate when people look at me and decide what I must think of myself based on what part of autism they classify me as having. That’s essentially telling me that I don’t have a mind, I just have an ‘autism’ that tells me what to think and dictates my every opinion. Which is a disgusting way to think about autistic people of any kind, real or imaginary.

Which I think is why the person above pointed out there’s nonverbal people who want cures. But the way they pointed it out, just made me want to clarify this huge bunch of things. Because it just… it’s not that simple.

But regardless of anything else, Autism Speaks is a horrible organization and they don’t even speak for most autistic people who want a cure. They can’t even hang onto autistic people who feel like they share their values more or less. And that says everything.

(1) Well they invited one guy eventually and then dropped him and then re-invited him and then there was a huge kerfuffle in the autistic community about whether that was deliberate or not. I don’t even remember details, which is kind of funny because he thinks that whenever I say I don’t like something he’s done, then it’s just because he had a fight with a friend of mine that I can’t even remember clearly. Because I have to have a vendetta against him, it can’t just be that our values clash too much to be reconciled and I occasionally say so in public. So I honestly don’t remember the details of anything that happened around him and this rally, nor do I care, nor do I think of him often at all for someone who supposedly has a vendetta against someone. Like I can’t remember the time before today when I last thought about him, let alone thought about him in a particularly negative light. Nor can I remember the last time my friend who fought with him ever mentioned him, even though we talk regularly. So suffice to say, if there’s anyone who can’t let go of the past it’s not on my side of things.

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