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.

Saturday, October 27, 2012

(Not) Helping

How would you feel about someone who did that/said this to you?

faceillyswing:
I’m going to help you with a jigsaw puzzle except what I’m actually going to do is eat the pieces and you’re going to be like “Hey please stop you’re doing it wrong,” but I’m not going to stop because I’m HELPING YOU and you should be GRATEFUL.
 The tags on it suggest that it's making an analogy to some allies, and, well, it's a good analogy for a certain autism charity...

It's what's happening.


(Not) Helping

We're raising awareness and you should be grateful for this.
We're telling the world about what you go through, and you should be grateful for this.

You're making the world fear me, and I want you to stop.
You're telling the world how hard it is to deal with someone like me, and I want you to stop.
You're saying little to nothing about how to actually help me.
You're saying little to nothing about what I need.
You're trying to fit me into a mold I was never meant for, and I want you to stop.

We're helping you, and you should be grateful for this.
We're doing what's best- you just don't understand what's really best for you.
You should be grateful.

15 comments:

  1. The analogy can even apply to another autism charity, which has made careers out of condemning all of the goals of that certain autism charity.

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    1. Care to explain? Accusations without included evidence mean very little here.

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  2. The ASAN and similar groups, are not proven to be wanted by many autistics. There has been no vote for their elitist agenda, formulated from ivory tower pseudo-intellectualism. Mental disability is not diversity. That is evident every day for many with autism, even if some want to shove the anti-cure agenda down our throats. Their associated advocates have warped minds of some desperate parents of autistics into being complacent with disability. Now tell me your evidence.

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    1. Not proven to be wanted vs proven to be not wanted- go search "autism speaks sucks" or anything similar. You'll get a LOT of results, mostly written by... actual autistic people! Shocker, huh.
      And... considering that every voting member of ASAN IS autistic, we know there's got to be some support.
      And Autism Speaks has put out videos in which parents have talked about killing their kids in front of their kids.
      How about my evidence is a Google search? It's not hard to use Google, and I think seeing piles of autistic people who are very clearly very disabled on the side of acceptance will do my argument much more good than anything I, a fairly conventionally successful autistic person, can ever say.
      Specifically, I think it would be: "Go read everything Amy Sequenzia, Amanda Baggs, Hope (forget her last name,) the guys from Wretches and Jabberers, Henry Frost ever wrote. Because they ain't ivory tower academics. They're non-speaking autistic people/(people with autism for Hope) who want acceptance.
      And right now, a cure doesn't exist. Being told that you are broken won't help, regardless of whether you would take an offered cure.
      (Oh, and BTW, I am only functionally anti-cure. In a society where it would ACTUALLY be a choice? You could probably talk me into the research lab. Just so you know.)

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    2. Don't refer me to any propaganda. I've read tons of it already. It's full of misleading information and absurd innuendos. It's written predominantly by the very high functioning. There are millions of autistics out there compared to the few who run the ASAN, with their stagnant leadership. There aren't piles of clearly disabled autistics who side with "acceptance". The ones advocating that admit they "pass" to others. That is not very disabled. There are autistics who get angry when having difficulties communicating. Many clearly express frustration and disappointment over their impairments. We don't live to be grateful for the "acceptance" and charity of others. We have our own ambitions and wants. Why don't you talk about what things are like for autistics who aren't geniuses like you. If the arguments of supposedly clearly disabled autistics are enough to make cure look bad, why do you make anecdotes of your own success to make cure seem absurd? What do I get out of not being cured besides, humiliation, dependence, miniscule opportunities, and getting to watch others rise above me? Cure will exist if your side doesn't prevent it from being researched. Some of us really do have neurological problems. It's not a self-fulfilling prophesy. We know of our problems anyway through experience. What is functionally anti-cure?

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    3. BS.
      If you call the writings of autistic people who CAN NOT SPEAK propaganda, then get off my page. (If you insist that it is after this, the comment WILL BE DELETED. You don't get to call things that clearly disabled people say propaganda.)
      And that's not particularly likely. Know how recent the "not wanting to be cured" movements are? Vs. how recent A$, TACANow, Cure Autism Now! DAN!, etc are? Know how much is still going to that kind of research. The idea that we're the only reason you haven't got a cure is LAUGHABLE.
      And you know what acceptance means? It means being allowed to try. It means being allowed the opportunities instead of being discriminated against. It means accepting what people want. (Yes, that means that with acceptance, should a cure come to exist, guess who would shake your hand on your way in to take it? Yeah, me, unless you told me to go away or whatever.)
      Every name I listed is non-speaking. Every single one. Why don't you listen to them?
      I use my own anecdotes because that's what I know from experience. They use their lives because that's what they know from experience. I can't speak for their experience, but I can read it, understand what they are saying, and tell you that if I am not enough (I don't expect to be, BTW), then you should listen to them to.
      Functionally anti-cure means that I oppose the idea of a cure being given to anyone who does not want it, which, given the way society handles developmentally disabled and mentally ill people currently, is something that would happen if we came up with one right now. It means that in order to oppose it being given to people who have said they do not want it, I have to work on changing society so that it would be a choice, but I also have to do my best to make sure that this change happens BEFORE a cure exists in any way possible.
      And this: https://docs.google.com/spreadsheet/ccc?key=0AnYMN3RVC5oldFVnak1tNW1BakNkNU84UjNuemNIYkE#gid=0
      (I didn't write it, but I did share the link to the survey itself on a parent group.)

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    4. Acceptance is not the same as being allowed to try. Many have tried and have not succeeded simply cause we weren't lucky enough to have as much aptitude as others. The opportunities include the neurological abilities to do them. Functioning comes from neurology. These movements aren't that young. It's been going on for years in different forms. If cure organizations are so ineffective and futile, why do you express so much fear over cure? Advancements are getting a lot closer to cure. Lots of knowledge has been attained. The government funding for research is larger, and 2 anti-cure self-advocates are on the IACC. Your ideas are getting too close to mainstream. So I am worried. Cure would be a choice, but the choice can't be available if cure is prevented from being devised.

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    5. No, it's not the SAME. It is, however, INCLUDED in what acceptance requires.
      No? You think it would be a choice? REALLY? Do all the kids taken away from parents who chose not to medicate them, do all the people told they don't know what's best for themselves, do all the people who have had their statements of do not want taken as evidence of incompetence to choose for all sorts of mental illnesses (not just autism) just BOUNCE or something?
      I did not say they were futile. I said that our efforts aren't stopping them. Which, you know, they kind of aren't if you look at how their fundraising and budgeting look. And I express fear because someone coming up with one scares me. Is it so hard to understand that looking at society, I conclude that as a whole, they mostly DON'T care what autistic individuals want unless we happen to agree with them, and so them coming up with something that would allow them to just make "autistic people who don't like how we treat autistic people" not exist scares me? (I mean, they'd also get rid of the autistic people who are cool with it, since getting them in for a cure would be pretty easy.)

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    6. I can't approve of "acceptance" if the definition keeps changing. I wouldn't know what I'm approving of. You can't prove there will be this coercion. It is proven that nobody had the choice to be disabled. Those with it have to put up with it no matter how bad it is. Why should you be fearful of others getting abilities you already have, unless you don't want them to be at a competitive level with you or don't want them to have what you have? I don't see any other explanation. You are part of society. What would you do to guarantee the wants of all autistics? Without cure, many will be dependent on that same society. This is an issue of fundamental rights, not whether or not they can be convinced to truly care for us. I think society is obligated to make sure all get a cut of success. Cure doesn't stop anyone's existence. That makes no sense. Cure is to enhance/augment functioning.

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    7. Plenty of people (again, yes, this includes the non-speaking autistic people whose writings you oh-so-disingenuously called propaganda) hold that a cure would make them a completely different person. It's not MY original idea.
      Who is changing definitions here? Accepting people means accepting people, period. If a person wants X for themself, cool, if they want to push it on someone else, not cool.
      "Why should you be fearful of others gaining abilities I already have?" Hm. What is an ability I already have that there is any evidence of my FEARING someone else gaining. Speech? Nope, I'm happy when someone learns to talk. Understanding of social interactions? Would require that I have it, which, well, I don't. Ability to communicate? Nope, glad when people get that.
      It's not specific gained abilities, which, you might have noticed, I like to see people get as long as they do it on their own terms. It's people going in and rewiring people's brains without consent that I'm scared of.
      Cure is to rewire the brain to "not autistic anymore," which is not the same as "to enhance/augment functioning." Proper supports are "to enhance/augment functioning."
      No proof? If things that happen EVERY FREAKING DAY do not constitute proof in your book, there is no convincing you. Want a count of how many parents have lost custody for refusing to put kids on medications that have really horrible side effects without there being much of any evidence that it was needed? Want a count of how many people are under guardianships, not for actual inability to make decisions, but because they did not agree with what the "people who knew best" wanted? Want a count of people who got drugged into submission for...wait for it... refusing drugs? The burden of proof falls on society to show that there would be a choice at this point.

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    8. You know you have lots of abilities and definitely have day to day functioning secured. I've seen your bragging. There is no rewiring of brains. That is not what cure is. Impairment is without consent. Why is it fair that some autistics have as many abilities as those like you have, while many others lack all kinds of abilities? The goal isn't to convert to "not autistic", as that doesn't describe much. The goal is to make sure all have those wanted and needed abilities. Supports aren't going to enhance functioning enough, as functioning is carried out by the brain. What do drugs and guardianship have to do with this? You haven't yet stopped these abuses, yet you still want autistics to remain disabled under the pretense of choice. And disability leaves many vulnerable to such things and dependent on those who can abuse. There is no way around that, except to get rid of the power relationship entirely. Again, you haven't proved that disability was chosen to begin with.

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    9. Um, yeah, that is what a cure for autism is. Because unless your brain gets rewired to "not autistic," no matter how many abilities you gain, it's not a cure. It's new abilities. Which means that you are arguing that I'm against something I'm not even against.
      I'm at least TRYING to stop those abuses. I call people out when they do them. I go protest the places that do them. You're just yelling at me for how they aren't gone yet.
      And what do they have to do with it? They show pretty darn well that we wouldn't actually get a choice about taking a cure or not if one existed.

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  3. I smell a troll. Anyone who can read Amy Sequenzia and Amanda Baggs and call actual real life experiences and opinions from autistic people "propaganda" are clearly drinking the A$ koolaid.

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    1. But calling a person's lived experience "propaganda" is. You want to not smell like a troll? Try not making troll moves while dissenting.

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I reserve the right to delete comments for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things.