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| Should we work with Autism Speaks to promote positive images of autism? |
| Yes! This isn't about spite. Any chance to get a positive message across is good. (Besides, if they back out now it will prove to everyone how they really feel.) |
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40% |
[ 36 ] |
| Not sure... (If this is your answer, please explain why in a Reply Post.) |
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13% |
[ 12 ] |
| No way! We don't want to make them look like they care while they are still working for a "cure". It's more important that people know we disapprove of their policies. |
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46% |
[ 41 ] |
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| Total Votes : 89 |
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ADoyle
Phoenix
Joined: Dec 17, 2005
Age: 33
Posts: 791
Location: Southern California, USA
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 Posted: Tue Apr 15, 2008 1:31 pm Post subject: |
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I don't trust an organization that wants to eradicate us, and I worry that they would edit our stories to fit their agenda. After all, they used the analogy of being like AIDS patients, even though the thing that makes us different is how our brains are wired.
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lau
Really nice person to know. :)
Joined: Jun 18, 2006
Age: 60
Posts: 9467
Location: Somerset UK
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| Posted: Tue Apr 15, 2008 2:00 pm Post subject: |
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I'm really quite surprised how how few (10%) have given a "Don't know" answer.
That, and the remaining 90% are split pretty evenly, at present, with a slight lean towards the "No" vote.
So far as I can see, most of the people voting "No" are really just worried that Autism Speaks can somehow modify/edit/distort/misrepresent any videos. I'm sure that copyright law can prevent that from happening. Also, I'm still gullible enough to believe that the crowd at Autism Speaks aren't all evil psychopaths.
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aspergianneocon
Butterfly
Joined: Feb 08, 2008
Age: 21
Posts: 12
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| Posted: Tue Apr 15, 2008 3:51 pm Post subject: |
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| lau wrote: | I'm really quite surprised how how few (10%) have given a "Don't know" answer.
That, and the remaining 90% are split pretty evenly, at present, with a slight lean towards the "No" vote.
So far as I can see, most of the people voting "No" are really just worried that Autism Speaks can somehow modify/edit/distort/misrepresent any videos. I'm sure that copyright law can prevent that from happening. Also, I'm still gullible enough to believe that the crowd at Autism Speaks aren't all evil psychopaths. |
That's not really how copyright law works. Also, here's the more relevant thing: Autism Speaks' media misrepresentations are not the only problem. We do have an issue with their fundraising means, but also with their fundraising ends: specifically their support for eugenics-oriented "cure" research aimed at finding a prenatal test which would allow the selective abortion of autistic fetuses. They continue to fund this type of research and refuse to fund positive "quality of life" oriented research. As long as that's the case, any autistic involvement with them just serves to mask their true nature. |
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archetype
Yellow-bellied Woodpecker
Joined: May 03, 2007
Age: 45
Posts: 74
Location: Connecticut, USA
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| Posted: Tue Apr 15, 2008 3:53 pm Post subject: Re: Offer from Autism Speaks, please give your opinion |
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| NicholasGray wrote: |
Still, they have all the money.
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So what? Autism and truth are not purchased by money - human primates are, and the worst of them, at that. We have nothing to do with that lowest level of sentience on this planet. We each were created greater than that, above that, and it is inappropriate to take a position of leadership and ask us to act like human primates do, negotiate the truth like human primates do, and compomise what is true like human primates do. We are each better than that; all of us, and you know it.
| NicholasGray wrote: |
Still,
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You just spoke everything you need to right there. All you need to know about what you really know and how you really feel.
One of the most - if not the most - important gifts we share is that we can know our thoughts and feelings about ourselves, where-as humans can never know but an iceberg-tip about themselves. We have no need for human socio-politics; human primates have need for that because they do not know anything about themselves and cannot meet their own needs. There is only the truth in this matter, and we all know what it is. You know it ... you said it right above; "Still..."
Your reluctancy is for a very good reason. It is because we are not human; we are better than that, and above such things as the need to influence or manipulate public opinion. Stay true, all, and there is no fear. What are you afraid of that you feel so weak that you must compromise everything that makes Autism, Autism?
Here, let me clarify your thoughts and feelings with some abridging....
| NicholasGray wrote: |
Still ---
they ... money. They ... corporate. They ... influential. They ... machinery ... influence ... opinion ... government dollars.
--- right?
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No, wrong. All of it is all completely wrong. You know that; you just want the support to be able to stand tall and separate yourself from the "They" you refer to ... the "they" that is not "you", the "they" that is not "me" and the "they" that is not "us".
Now you have that very conscious and adamant and powerful support.
Here ... very most simply:
I do not want any human primate government agencies in my life.
I do not want any human primate corporations in my life.
I do not want any human primate 'machinery' in my life.
I do not want any human primate influence in my life.
I do not want any human primate opinion in my life.
I do not want any human primate government dollars in my life ... nor the unspoken toll that is required for those dollars; I will not enter into that 'agreement' with human primates - I have learned that lesson too many times.
If you want to lower yourself to the human primate level, you may but do so to yourself only; nobody has the right to prevent you. But I would not advise it, and I do not want to and I will not go along for that particular ride. I have fought much too hard against all odds in my 45 years to lay myself down now, because you are uncertain, that I can be walked upon and stepped upon, compromised and collateralized, manipulated and influenced. Been there, done that, for far too long; it's time for that to end.
NOR WILL I MANIPULATE NOR WILL I INFLUENCE NOR WILL I MARKET NOR WILL I NEGOTIATE NOR WILL I MAKE PUBLIC OPINION NOR WILL I COMPROMISE NOR WILL I FOOL MYSELF NOR WILL I FOOL OTHERS.
I am Autistic. I am only interested in the one thing I have always been only interested in; That-which-is-true.
There is nothing else.
Human primates concern themselves with everything else except what is true.
Human primates make the wrong choices for themselves because they do not know their own selves and cannot meet their own needs and so substitute a mockery and a devastation for what they need instead - tempted by money and influence and power over others; so when you ask if that is "Right?" ... the answer is an obvious "No."
That is the opposite of Autism. The opposite of AS. How does Autism win being its own opposite?
If you are uncertain do not take a place of leadership yet. What on this planet are you doing daring to speak such bombastic human primate attributes for the likes and kind of my caliber, who has never compromised and never will? If you are not strong enough or sure enough to navigate the right path, please stop navigating on others' behalf.
While I work to find means of independence and complete freedom from the ways and means of human primates, you would sign your soul away - and mine, too - to such beasts as have done to me and to you and to all and to themselves and to this entire world as they have done and will only continue to do?
Human primates must learn to share this planet with another sentient species - when they cannot even share it with themselves. We do not ever operate as they do. We are always better than that. We do not politic. or influence .. or hire human primate lobbyists or anything but represent the truth. That is who and what we are and we lose any other way, whether it is ourselves that we lose or just a 'campaign'.
I will not lose myself. I have fought too hard to keep myself.
I have never battled human primates using human primate means - I and we have much more powerful and far more pure means; I simply represent the invariable truth and let them flail themselves against that monolith, should they wish.
We 'win' by one means and one means only; by staying true to ourselves. If humans cannot help themselves, and we wish to survive on this planet, then we must help humans help themselves.
We come from a position of absolute authority and power. There is nothing weak or petty about Autism. We do not play patty-cake with humans; they will always win human games in a human arena.
When was the last time Autistics lied for profit?
When was the last time Autistics crafted subliminal advertising?
Ar ye gone insane, me lad???
Listen to your self; you naturally tell yourself everything you need to know. THAT is our power and our authority.
Be true. Be strong. Fear not, and so resist temptation to kneel, for there is no need. How can you lead through the dark, if you are afraid of the dark? We are stronger than that, look and see and be amazed - and Time and Nature and Destiny are all on our side.
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ouinon
chemical reaction
Joined: Jul 11, 2007
Posts: 5340
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| Posted: Tue Apr 15, 2008 6:49 pm Post subject: |
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Golly, is that out of I, Robot? What was that Central Intelligence Robot Brain called again?  V.I.K.I. that's it.   
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archetype
Yellow-bellied Woodpecker
Joined: May 03, 2007
Age: 45
Posts: 74
Location: Connecticut, USA
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| Posted: Tue Apr 15, 2008 8:43 pm Post subject: |
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Are you talking about the book or the movie?
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ToadOfSteel
Unlovable
Joined: Sep 24, 2007
Age: 21
Posts: 4901
Location: New Jersey
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| Posted: Tue Apr 15, 2008 9:17 pm Post subject: |
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I voted not sure... I do seriously believe that there are concerned mothers on autism speaks that truly do want the best for their children, they are just so incredibly misguided by the organization itself that they will support the organization's ideas. It's a standard NT mob complex for the masses of any given population (in this case parents of autistics) to swarm around a charismatic leader or group of leaders in times of "crisis", the parents considering the birth of an autistic child to be such a "crisis" since such a child does in fact cause drastic changes for the parents (what with raising the child and all).
I still hold out hope that there is good in those parents... and if there was some sort of a compromise we could reach (yes, that means we would have to budge from certain ideological viewpoints of our own as well), together both ends of the community could really get some actual good done (and i don't mean autism speaks's version of "good", i mean things that can truly help nt's and autistics to understand one another)... one thing I would really like to see is education of the general public of the positive aspects of autism, so that people don't see it as a "disease" or a "defect" anymore. |
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Inventor
Phoenix
Joined: Feb 16, 2007
Posts: 3538
Location: New Orleans
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| Posted: Wed Apr 16, 2008 2:42 am Post subject: |
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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. |
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Fuzzy
Ack! Thbbbt!
Joined: Mar 31, 2006
Posts: 3686
Location: Alberta Canada
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| Posted: Wed Apr 16, 2008 4:35 am Post subject: |
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| Make a DVD, sell it on WP. I'll buy one. Give the money to Alex. Lets make something of our community. |
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polarity
Toucan
Joined: Feb 16, 2006
Posts: 298
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| Posted: Wed Apr 16, 2008 9:04 am Post subject: |
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Is it posible to require that any clips made under 'fair use' must include a link to full versions.
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NicholasGray
Tufted Titmouse
Joined: Jan 24, 2008
Posts: 46
Location: Phliadelphia
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| Posted: Wed Apr 16, 2008 12:42 pm Post subject: Fair Use |
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The Fair Use umbrella does not cover every scenario. The willful misrepresentation of someone's words or work can be considered libelous depending on variables to numerous to list here. Besides, to excerpt these interviews too egregiously would potentially put them in a PR nightmare.
My main reasons for leaning toward sharing these videos with them are simple:
1) They offered publicly. Spurning that offer entirely gives them the leeway to say "we have tried to include these people and their ideas, but they couldn't get anything together." I don't want to give them the ammunition to further marginalize the autistic community.
2) I still believe, perhaps naively, that the best way to change someone's mind is to educate them. Expose them to the truth instead of to your anger and they are more apt to actually listen to your position.
3) Autism Speaks appears to be dominated by NT parents. It is these parents who have the greatest direct impact right now on an entire generation of auties' lives. They will most directly determine whether these kids growing up feeling loved or ostricized, whether they are proud of their differences or ashamed of them, whether their education is filled with experimentation in language or experimentation in chemicals. In short, these people -- like it or not -- will decide whether an entire generation of autistic children with greater acceptance than any generation before it, or with more persistent physical and psychological torture. I don't delude myself that any little videos I make can change the entire landscape. But I would like to reach as many of those parents as I can. And they seem to be gathering at Autism Speaks.
But I am not asking them to fund it, to put their name on it, or to sponsor it. I won't accept any of the above. After so many people here have shared their misgivings about that group, I will maintain the autonomy of these interviews as much as possible. I have a meeting in two weeks with some fundraising people from major charities outside the world of autism about helping me organize this and fund it. I will update everyone when I know more. |
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NicholasGray
Tufted Titmouse
Joined: Jan 24, 2008
Posts: 46
Location: Phliadelphia
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| Posted: Wed Apr 16, 2008 12:57 pm Post subject: |
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Oh, and I just want to clarify one thing:
| Quote: | 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.
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There are many other places to market your film.
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Make your film, stay out of politics.
Burn it to DVD, sell it on Wrong Planet. |
I don't want this project being confused with the movie I made. If You Could Say It In Words is a feature film. And frankly, the film company I a part of is interested in licensing and/or selling it to as many people as are interested in seeing it. It features an undiagnosed aspie character not to be political, but because I was writing about that feeling of being alone, even when you're surrounded by other people, and about the feeling of lying to yourself about who you are and what you want in order to escape that isolation. But make no mistake, it was made as a commerical venture, no different than if I decided to make a movie about bank robbers or pirates.
The series of video interviews I proposed in this discussion thread is not going to be sold. It is going to be made available for free. This is meant specifically as an awarenss and advocacy campaign. In fact, the same film company that I made If You Could... with met last week to discuss these videos and basically said: "We don't do advocacy campaigns. We are an organization for arts, not politics. We make it a priority not to comment on the politics of the artists we work with, either positively or negatively." They have, however, offered to donate equipment and legal advice for the project once it is set up with a non-profit.
Just wanted to clarify that the movie and the interviews are two completely separate things, with different formats for exhibition, different reasons for existsing, different teams behind them, everything. |
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polarity
Toucan
Joined: Feb 16, 2006
Posts: 298
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| Posted: Wed Apr 16, 2008 2:20 pm Post subject: |
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I think really we need to show all aspect of what it means to be austistic, from those who've succesfully integrated into NT society, to those who are happy in their own worlds, and even those who are struggling without support.
Someone posted this on another forum on a totally different topic, but I thought it rather fitting (He's a pediatrician):
| Quote: | A newborn infant demonstrates a stereotyped behavior repertoire that is smaller than that of your average insect. In essense, every little cute thing an infant two hours old does is simply reflex. I can elicit almost any available behavior from a newborn with a maneuver specific to that behavior. I can make a newborn wiggle his butt, grab my hand, burp, suck and swallow, and even poop. And it will work >98% of the time and the remaining ~2% of infants probably have some neurological pathology.
By the time that infant is two weeks old, he is fixing on peoples' faces.
By the time he is six months old he is cooing, laughing, interacting, and you can begin to see a little human being coming to consciousness.
At about a year he's walking (+/- 2 months).
These milestones are set in stone. A baby who is not walking by 14 months of age is developmentally delayed. The milestones will all come in pretty much the same order for every baby. In that respect, a good deal of human intelligence is inborn, pre-programmed, and hard-wired.
But over the next 17 years, that child will be exposed to a world in which there are rules, expectations, patterns, and probabilities. By age 5 he will speak a language fluently and as a native. If he hasn't learned a given language by age 10-12 he will *never* speak it fluently and as a native, no matter how good at it he gets.
Without those experiences and inputs, however, that stereotyped pattern of development becomes disordered and delayed. Until a certain age, children can recover those milestones, but after a certain degree of developmental deprivation, they are destined to be mentally retarded, in spite of having been born with a perfectly good brain. |
My main reason for voting no, as it no doubt is for many others, is the use of the word cure. I've already made my opinion clear on this, and the above only says the same thing from the point of a professional. Delaying assistance that may help development is the worst thing for autistic people. The sooner they get appropriate help, specific to their condition, the more advanced their development will be.
What I'd like to add is that Autism Speaks are also misleading the parents and others, who do not have a sufficient understanding of what a developmental disorder is to understand how hard it is to change. Giving them false hope and recieving donations based on what is little more than a lie is just wrong.
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serenity
Phoenix
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Joined: Feb 26, 2007
Age: 30
Posts: 1254
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| Posted: Mon Apr 21, 2008 12:15 pm Post subject: |
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I would like to apologize for my ranting post a few pages back. I don't know what came over me, I have never exploded on an internet forum before. I took a short break from WP to compose myself. This topic is just very, very close to home for me, so I don't think that I will add anymore to the discussion, because I'm not sure that I can be calm about it. I just wanted to say that I'm sorry. 
(I hope that I haven't interrupted the thread by posting this.) |
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 28
Posts: 1041
Location: Arizona
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| Posted: Mon Apr 21, 2008 8:22 pm Post subject: |
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| serenity wrote: | I would like to apologize for my ranting post a few pages back. I don't know what came over me, I have never exploded on an internet forum before. I took a short break from WP to compose myself. This topic is just very, very close to home for me, so I don't think that I will add anymore to the discussion, because I'm not sure that I can be calm about it. I just wanted to say that I'm sorry.
(I hope that I haven't interrupted the thread by posting this.) |
It's okay, serenity, really. We all get a little upset sometimes and need some time away.
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