Apologies for two depressing posts in a row, but this is important

[sasha_lilyrat]

I'm not usually the type to sign online petitions - they rarely make any difference - but I must make an exception for this.

http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php

On May 9th 2006, Autism Speaks launched a film

Comments

[malicious_pengy]

*puts on boxing gloves* *puts on facemask* *entire umpire outfit* *prepares written statements of apology, and alibis

This took me way too long to write and it probably has awful sentence structure

[sasha_lilyrat]

I'm not saying that Autism never causes problems, or that autistic people are never unhappy about it. God knows I've been through hell with my autism, and I'm on the 'mild' end of the spectrum. I'm saying that creating and manipulating a documentary to purely focus on the negative things, when there is already such a stigma attached to Autism, is utterly revolting and only serves to cause MORE difficulties for autistic people, because it affects the way society views us

s awful sentence structure

[malicious_pengy]

Okay, here we go again. I really did not want to check my email this morning, because I hate fighting and I hate arguing

Re: s awful sentence structure

[sasha_lilyrat]

Yes, I've met disability pride people. The reason I described nerve damage as 'clearly a disability' is because you said it affects your happiness and quality of life. You want to go hiking (which is fair enough). So it's a disability for you. It's not a disability for Erica because she's happy with it. That's what I was getting at. A 'disability' is only a disability if the person in question feels it is, which obviously I don't. (For the record I'm inclined to agree with your friends; the world should change to accommodate people in wheelchairs and so forth, no the other way around.)

About OCD, you're extremely dark, but about autism you're all light?
Yes, because my OCD is an illness which I have developed and which is damaging to my quality of life. Aspergers is something that is part of who I am and always has been, and I wouldn't want to live without it because I wouldn't be me. It's just difficult navigating that sometimes

Re: s awful sentence structure

[malicious_pengy]

How the hell did that get posted? I wasn't done with it...

The funny thing is that Erica isn't disabled. She clearly states that, so it isn't an invisible disability, either. But the others were just as vocal, just not as likely to bite people.

Do you want me to leave? I do not do this often. You have not seen me do this before. Whether I stay or go, you are not likely to see it again.

Re: s awful sentence structure

[malicious_pengy]

I think I read those at the time, but specifics in lj never seems to stick in my mind. Much more of a general trend person in this. Which is probably good, because I would never get anything done.

You can write those entries, and still consider it not a problem?

[sasha_lilyrat]

You can write those entries, and still consider it not a problem?
Yes. I think this is where we are getting stuck - the terminology of it. I don't see Aspergers as a problem. I do think it causes problems. There is a difference. But I'm not quite sure how else to explain it.

[malicious_pengy]

I see. Not the specifics of course, but there are problems and then there are problems. I guess? I do have something more specific in my mind than that, but it's not moving to my fingers, so I couldn't really tell you what.

I can no longer sit at the computer and argue/debate/bitch/slap people around. Whatever it is I am doing. RenFaire...I'm going dressed as the 60s. For some reason.

But could I know if you intend to unfriend me before I go off to the park? It would be better for me to stop stressing. I hate arguing/debating/bitching/slapping people around, even with people on the internet, and would feel much better with some sort of response.

[sasha_lilyrat]

Right now I'm not sure. I usually agree with you and you leave interesting comments, and this has at least made me think about how to explain my point of view. But I don't really appreciate being told how I should or should not feel about Autistic issues, when I've lived with it my entire life. I'm sorry that my view is different than yours. Of course, it would be hypocritical of me to expect you to agree with me since I obviously don't subscribe to your 'middle' view of matters.

So, um, yeah I don't know. Yes, I am so helpful like that.

Have fun at the RenFaire, anyway! :)

Re: s awful sentence structure

[malicious_pengy]

Okay, I think that is a touchpad problem. Need to get my mouse back. I was even in the middle of deleting the subject line and writing a different one in!

The other part that mysteriously didn't get posted.

[malicious_pengy]

Okay, and after getting not-bitchy for a second, we get back into the probably bannable arguing

Re: The other part that mysteriously didn't get posted.

[sasha_lilyrat]

I'm not gonna comment on the family structure/employment thing because I have major issues with my own inability to attend college/work right now. But I do think it's rather privileged to assume that every member of the family can contribute.

I think you think there is some iconic life I want everyone to lead, and hit people with sticks when they don't? Or at least that I am buying into the society's drilling that this is correct?
I don't think this at all. :\ I just think you're not fully aware of the effect that neurotypical society has on the Autistic community. That's all I was saying.

As for my mother... see this post. I am perfectly aware of how difficult it is for her, how hard I make her life, and how absolutely wonderful she is for coping the way she does. I have plenty of guilt about it already. I don't really need you to tell me how I make her suffer.

Re: The other part that mysteriously didn't get posted.

[malicious_pengy]

*American Protestant

[otoselkie]

The issue here isn't the suggestion that autism causes trouble for the people and their families. It isn't that they're showing autistic children having meltdowns or not coping. It's not even that Autism Speaks is a pro-cure organization.

It's that they made a video which is widely-viewed, often as an educational or fund-raising piece, which ONLY depicts these children's failure and hardship, which DOESN'T show them doing well at anything.. It's that kids don't have the ability to say, "I live in a world where I can't function, I have to try so hard every day," and nobody considers that they might want to. More than anything else, it's that they bill the mother who thought of killing herself and her autistic daughter, and says she only relented because of her neurotypical child, as a representation of all mothers - and forgot that some DO kill their autistic children.

[malicious_pengy]

That's entirely fair, and I agree with that. I just seems like people here tend to go the opposite direct and deny it is ever a problem.

[sasha_lilyrat]

I'm guessing you mean me, because from all the other comments to this post all I can really see is 'lol Autism Speaks fails so hard' (which is true). And I've certainly never intended to imply that it is never a problem, but only that it's not the Terrible Soul-Destroying Thing that these sort of films make it out to be. Someone's gotta make up for all the 'oh it's so awful' stuff. I wouldn't be nearly so defensive or vehement that it's not a disability if the world wasn't constantly telling me what a burden I am. I'd use personal anecdotes as examples, lest you thing this is exaggeration for the same of ~oh look at me I am so persecuted~, but that seems unnecessarily emo and self-centred for this post.

And with all due respect, surely it's better for Aspies/HFAs to speak for other autistic people, although this obviously isn't ideal because it's different for everyone, than for neurotypicals to speak for us all?