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Autism Politics, Activism, and Media Representation
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[quote="Inventor"]Still, the money. If they wanted to represent the broad spectrum of autistics, and they direct $10,000,000 a year in grants, a minor $100,000 a year to Alex Plank would be a show of good faith. They seem to only be interested in corporate sponsers, and rich parents of autistic children. I had heard of Autism, but until I came here, I never thought it applied to me. Now I see it explains my life. Wrong Planet is up 10,000 in the year I have been here. Many are discovering this information. It changed my life. Just by the 1 in 150, there are 2,000,000 in the US. I doubt that 5% of autistics know they are. With 95% wandering around thinking it is just them, and they are strange, well I put down that load when I came here. I do not see myself as AS, it runs deeper. So I am not talking about Autism Lite, Half Aspies, but real Autistics who are going through life not knowing. Autism Speaks was no help, for they portray the view of Autism I had heard of, totally unfunctional. Wrong Planet shows the whole spectrum, people like me, who do get by, but have had problems. There are still several million people who are where I was a year ago, and no one but Alex is trying to bring them in. The vast majority of people with autism do not know it, and are leading somewhat normal lives. Your film could be a moment of discovery for them like Wrong Planet was for me, and many who cite Wiki, as their point of discovery. I am involved in an Intellectual Property action. Expect to spend at least $250,000. Copyright Law has an exemption for Fair Use, which allows for the use of a paragraph, a clip from a film, without permission. They are just asking you to give them weapons to use against us, and the money and political power are on their side. Under Fair Use, you cannot withdraw. Once they have it, they can edit, and still credit you. Alex is our Simon Bolivar, and you are being used by the CIA to make a report on the goals of the revolution. Still, there is the money, and for that much they will do what serves them, and destroy any challange. There are many other places to market your film. Of course they would like to gain control of media, and here we have the most manipuative of professional fundraisers and some gullible autistics. You cannot win, and you can do us damage. Make your film, stay out of politics. Burn it to DVD, sell it on Wrong Planet. This is all new, we would like to know how you see us, and you would like our feedback, and together, we can get to the real issues, and you can make a much better film. Autism Speaks was not going to give you money, we will. They would not help in reaching a broader understanding, we will. We are the inside story on autism, the one that only those who live there know.[/quote]
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Bopkasen
Posted: Mon May 12, 2008 3:43 pm
Post subject:
morning_after wrote:
alex wrote:
Here's the video:
Alex, did you feel like they lied to you at all? You were there and I wasn't.
I think the question sounds genuine, and that they would like to see it.
In my public speaking and debate experiences, they parry you at the end.
I think the argument that curing all autism spectrum is bader than helping low functioning bracket. However, there is no real way to target specific spectrum for "cure" therefore it is pointless to go further in the global research.
This argument would have a "I agree" or some kind of statement from Wright to rebuttal.
They did made a neutral statement with a negative comparison that it April and it Autism Awareness.
I wished I was with you Alex, I would have do some speaking too since public speaking is my expertise. However, this plane cost and a 5 mins speech probably not worth it unless I was truly a wealthy lobbyist.
auntyjack
Posted: Tue May 06, 2008 11:25 am
Post subject:
autistican_beauty wrote:
Quote:
I say yes. No progress can be made without communication and compromise.
I will extend Speckles words to my opinion. If we as Aspies and NT's are EVER going to come together, it must be done with respect. The anger and attacks have to stop.
I agree about respect but if you think Autism Speaks respects us, you are kidding yourself. As long as they fund genocide there is no respect. What they want are asking us to do is give them credibility to eliminate autism, not because they respect us but because they are hearing the criticism that they do not represent autistics. if we provide material for their site, they can say they have the support of autistics. I am so amazed that people are agreeing to support genocide. Why don't we all just line up meekly for the gas chamber and save society the bother of fundraising for legal elimination? Jeez, maybe we deserve to be eliminated. We are dumber than cows. They don't happily hop onto the abattoir trucks, thanking the driver for the offer of a free ride to oblivion.
morning_after
Posted: Mon May 05, 2008 9:02 pm
Post subject:
Maybe they want to give themselves a better reputation among us.
Malachi_Rothschild
Posted: Mon May 05, 2008 1:35 pm
Post subject:
I think, just, be aware of the rule of reciprocity which they might think will come into play:
http://knowledge.wpcarey.asu.edu/article.cfm?articleid=1341
morning_after
Posted: Sun May 04, 2008 8:05 pm
Post subject:
I'll have to agree. If they are really willing to work with us we shouldn't have to agree with them.
autistican_beauty
Posted: Sun May 04, 2008 3:59 am
Post subject:
Quote:
I say yes. No progress can be made without communication and compromise.
I will extend Speckles words to my opinion. If we as Aspies and NT's are EVER going to come together, it must be done with respect. The anger and attacks have to stop. We have to be better than politicians. Nobody likes getting slapped across the face Aspie to Aspie, Aspie to NT, NT to NT, etc...if a system doesn't work after employing this simple but all-too-forgotten strategy, then cut it off like a limb with gangrene. Hate isn't healthy. I'm so disheartened to see the way it spreads like wildfire on social networking sites. I sent AS a poem for their World Autism Day writing contest. I did it in the hopes of enhancing adult awareness, an issue I find greatly ignored and lacking in terms of support and services. They did choose to publish it. I was glad because I achieved my goal and yes, it was good to see my work in print again after several years. My point is, let's agree to disagree, be respectful and work with the Wrights and AS. If they choose to cooperate, a gain for all. If not, we as the autism community cut our losses and move on.
Speckles
Posted: Sat May 03, 2008 11:57 pm
Post subject:
I say yes. No progress can be made without communication and compromise.
auntyjack
Posted: Sat May 03, 2008 4:24 am
Post subject:
The_Cucumber wrote:
Well, I suppose we could if we do it right.
Simply showing someone why they are wrong without actually saying "your wrong" can be far more effective then telling people they are wrong and backing up your argument.
So I think we should send them as many success stories of people with autism as we can. Preferably, it can be inferred that if the person did not have autism they could not have succeeded in the way they did.
If we send them materials to use on their site, we are supporting them. We give them validity. By our actions we say that they are ok.
The best thing that we can do is to refuse to support Autism Speaks until they accept us on our terms and let the world know that we do not support them and why.
auntyjack
Posted: Sat May 03, 2008 4:20 am
Post subject: Re: Offer from Autism Speaks, please give your opinion
NicholasGray wrote:
Suzanne Wright, the co-counder of Autism Speaks, responded with a public offer to promote positive stories on Autism Speaks' website if I provide them to her. This was, of course, right after she claimed her orgainzation is making a ton of progress to make autistics feel more accepted. She then promptly compared autistics to AIDS patients.
..
Nicholas
The only way that I would support Autism Speaks would be if they were to reform their management team to include 50% autistic representation. I would then expect them to rework their website with regard to an evaluation by the autistic board members. I would expect them to insist that all research funded by them be subject to a member of the autism committee on the review team so that only proposals which meet an autism friendly protocol be funded. I suggest that fundraising no longer be promoted in a manner which demeans autistic people as damaged beings in need of fixing.
I suggest that as they clearly demonstrate a limited understanding of autism (the comment about Aids shows that) that
autistic adults should boycott the organization until they are prepared to accept us as equals.
krex
Posted: Thu May 01, 2008 6:45 pm
Post subject:
NicholasGray
Posted: Thu May 01, 2008 3:10 pm
Post subject: Autism Speaks spoke
Hey all.
Yesterday I received a call from Autism Speaks' Director of Special Programs. Apparently there were some snafus with their blackberry devices and international travel, so they just got my messages. Or maybe some our grousing got back to them, who knows.
But they are going to make good on their offer to create web space to host the videos (meeting next week about how/where on their site) and at least sound genuinely enthused to expand upon the messages they are putting out. I am cautiously optimistic right now.
When I talk with them next week, I will bring up all the concerns you guys have expressed to me before moving forward. And I will make sure to keep everyone on this board in the loop.
Nicholas
CockneyRebel
Posted: Tue Apr 29, 2008 7:58 am
Post subject:
I've tried to sign it, again but they only take one signature per person, now.
krex
Posted: Mon Apr 28, 2008 9:23 pm
Post subject:
Autism Speaks offer....Could you legally show a clip of her making the offer, (as shown in the meeting)? I did have my suspicions that the comment she made was "off the cuff" and not sincere but meant to present them as "reasonable". I was hoping I was wrong, regardless of how rare that is
"Autism Speaks is so busy speaking for us, that they don't seem to have time to listen"...would make a good sound bite following the clip of her making the offer and your documented,(always keep a written record of when you call and what their response...or lack of one... was), attempts to contact them for follow-up.
I can't recall if I mentioned this before but if you are still looking for suggestions about your film for this....I would like the point to be made that....
1)There are new technologies that are allowing "non-speaking autistics" to communicate and prove themselves to be thinking, feeling and caring individuals...something that some did no realize until they were given a voice by technology...(thinking of Amanda Brags(sp?).
2)There is a lot of credit being given to various "treatments"...ABA and others...that are given credit for the improvement of autistics kids functioning that could be accounted for by nothing more then "time". Point being....I consider myself developmentally delayed and even without ABA, I improved in some areas over time and life experience. Scientist could learn a lot more about how this happens (what helps and what hinders), if they would spend more time "studying" aspies who were raised before there was a DX. The fact that many are ignoring the reality of their(our) existence is perpetuating the agenda that this is a "new epidemic", rather than the reality that we ave always been here.
MysteryFan3
Posted: Mon Apr 28, 2008 5:22 pm
Post subject:
Not entirely unexpected. Her offer was made in a standard "business pretty" delivery. It's hard to tell if someone is sincere when they do that. Most often, they're just shifting the next step to someone else.
Still, they may actually follow though. Having poor organizational skills is not restricted to Aspies.
polarity
Posted: Mon Apr 28, 2008 4:24 pm
Post subject:
A follow-up in the youtube comments to the video might be a good start, if they're still unwilling to follow up on it aftyer being informed of your intention to make their insincerity public.
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