Civility in Autism Politics - How can we draw more flies?
27 Sep 2011, 2:35 pm
The Autism Speaks interview, which I posted over on AFF, certainly caused a ruckus.
This controversy only served to reinforce my view that open aggression and hostility will not gain us any desirable results.
It seems Dana Marnane used the interview to emphasize a shift in Autism Speaks' understanding and representation of autism.
This really seemed to frighten a lot of people!
If Autism Speaks does, indeed, make amends and eventually manage to change its image, "the enemy" will have evaporated. Where does this leave the radicals whose entire political agenda revolves around protesting this "Nazi Organization?" As we recently witnessed, it leaves them squabbling amongst themselves.
If all we do is reduce the negative, without accentuating the positive, we will end up with nothing. Protesting the past actions of Autism Speaks doesn't do much good, in and of itself, because complaining about a problem does not fix it. This is especially true when Autism Speaks is finally responding to these protests by attempting to become the organization more realistic individuals wish it to be (the less realistic ones simply wish to see it destroyed).
I may have an opportunity to do a story on Hacking Autism for my new Wrong Planet column, "Inside Out: The Life and Adventures of an Optimistic Autistic," which will premier this week.
If you guys are unfamiliar with Hacking Autism, go to http://www.hackingautism.org/.
Do you think Autism Speaks' involvement here represents a step in the right direction? If so, why? Why not?
How do you feel about encouraging a constructive, rather than destructive, approach to autism self-advocacy? Can there be a voice of moderation in this turbulent political climate? And don't you think such a voice would win over a far larger body of supporters, within and without the autistic community?
Some people seem to believe that winning popular favor and support is not a positive goal, but I would have to ask them, "What is the ultimate goal of the autistic community? To rule the world with an iron fist? To rid ourselves of everyone who thinks differently than us?"
A neurodiverse world cannot, by definition, be exclusively autistic. If this is our goal, then we are just meeting one "Nazi Organization" with another.
If we want to live as respected and valued members of society we should really work on making our cause a bit more attractive and compelling to people of all sorts.
This should not be a war... not NT vs. Autistic, not Autism Speaks vs. Autistics.
We should engage, with attractive and respectable language, in the human conversation, and politely but firmly suggest that the human race recognizes it's inherent Neurodiversity.
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
http://www.facebook.com/pages/JohnScott ... 8723228267
27 Sep 2011, 3:54 pm
We flourish when we work together and dissipate when we work against each other. The only reason human beings cover the planet, as opposed to our brethern primates.
What you have presented here is as close to what I have as a human mission statement that could be applicable to anyone living anywhere in the entire world. There are many that follow it unwittingly and some that don't.
Autism politics is a small part of the community here. It is not a creed here to take up arms against an opposing force. We are free here to make things better for ourselves and others with positive contributions, whether it presenting improvements seen in organizations that are changing for the better, or just supporting each other as fellow human beings.
27 Sep 2011, 4:03 pm
What you have presented here is as close to what I have as a human mission statement that could be applicable to anyone living anywhere in the entire world. There are many that follow it unwittingly and some that don't.
Autism politics is a small part of the community here. It is not a creed here to take up arms against an opposing force. We are free here to make things better for ourselves and others with positive contributions, whether it presenting improvements seen in organizations that are changing for the better, or just supporting each other as fellow human beings.
That is really going to take a bit of getting used to. It is certainly refreshing though.
I guess I find it hard to believe that it is not controversial to be against meaningless controversy over here on Wrong Planet.
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
http://www.facebook.com/pages/JohnScott ... 8723228267
27 Sep 2011, 4:22 pm
Autistic people are as varied as any other group of people. The hardest part of being Autistic that I can see is not gaining acceptance with others because of differences. At any given time there are over one thousand people online here.
My understanding is it doesn't get much higher than forty on any other internet sites for Autistic people, at any given time. The reason I believe this is the case, is because reasonable human differences are tolerated here; it is a real place for neurodiversity.
It is the only way to make it work; apparently the owner has a great deal of insight into what will work as opposed to what will not work. The numbers are the evidence. It works.
27 Sep 2011, 4:33 pm
i certainy comend your diplomacy,ive always been against all this infighting too.i dont anymore think that A.S and the asan will ever cooperate.i think when computer facilitated comunication gets better that will be decisive.because the parents from A.S viewpoint are all under the assumtion that they know what there kids are thinking.the same with asan,there rightness is based on the belief they represent everyone
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27 Sep 2011, 5:01 pm
My understanding is it doesn't get much higher than forty on any other internet sites for Autistic people, at any given time. The reason I believe this is the case, is because reasonable human differences are tolerated here; it is a real place for neurodiversity.
It is the only way to make it work; apparently the owner has a great deal of insight into what will work as opposed to what will not work. The numbers are the evidence. It works.
I think this website is certainly attractive and appealing. Hopefully my writing will add a little something.
I do think that Wrong Planet is a thriving, urban area, and militancy often continues in times of peace way out in the less populated backwoods.
I'm thinking of the lost soldiers who didn't realize the Civil War was over. After times of intense fighting, peace can be haunting and unfamiliar.
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
http://www.facebook.com/pages/JohnScott ... 8723228267
27 Sep 2011, 6:14 pm
http://www.shirky.com/writings/group_enemy.html
I see a common enemy as a real or imaginary force that binds people together. I think it is a basic part of human nature. Humans have been faced with violent conflict for survival for centuries.
As a social animal that has become domesticated, without wars on our soils, that part of our nature, I think, has been replaced with sporting activities (allegiance to a team vs. opposing teams as the enemy), politics, religion, and the commercialization of everything with sex and/or violence.
I saw the link above at the other site, from an individual that appears to be presenting it for clarity of the issue over there.
Here is an excerpt from the article:
You go on IRC and you scan the channel list, and you say "Oh, I know what that group is about, because I see the channel label." And you go into the group, you will also almost invariably find that it's about sex talk as well. Not necessarily overt. But that is always in scope in human conversations, according to Bion. That is one basic pattern that groups can always devolve into, away from the sophisticated purpose and towards one of these basic purposes.
The second basic pattern that Bion detailed: The identification and vilification of external enemies. This is a very common pattern. Anyone who was around the Open Source movement in the mid-Nineties could see this all the time. If you cared about Linux on the desktop, there was a big list of jobs to do. But you could always instead get a conversation going about Microsoft and Bill Gates. And people would start bleeding from their ears, they would get so mad.
If you want to make it better, there's a list of things to do. It's Open Source, right? Just fix it. "No, no, Microsoft and Bill Gates grrrrr ...", the froth would start coming out. The external enemy -- nothing causes a group to galvanize like an external enemy.
So even if someone isn't really your enemy, identifying them as an enemy can cause a pleasant sense of group cohesion. And groups often gravitate towards members who are the most paranoid and make them leaders, because those are the people who are best at identifying external enemies.
The third pattern Bion identified: Religious veneration. The nomination and worship of a religious icon or a set of religious tenets. The religious pattern is, essentially, we have nominated something that's beyond critique. You can see this pattern on the Internet any day you like. Go onto a Tolkein newsgroup or discussion forum, and try saying "You know, The Two Towers is a little dull. I mean loooong. We didn't need that much description about the forest, because it's pretty much the same forest all the way."
Try having that discussion. On the door of the group it will say: "This is for discussing the works of Tolkein." Go in and try and have that discussion.
Now, in some places people say "Yes, but it needed to, because it had to convey the sense of lassitude," or whatever. But in most places you'll simply be flamed to high heaven, because you're interfering with the religious text.
So these are human patterns that have shown up on the Internet, not because of the software, but because it's being used by humans. Bion has identified this possibility of groups sandbagging their sophisticated goals with these basic urges. And what he finally came to, in analyzing this tension, is that group structure is necessary. Robert's Rules of Order are necessary. Constitutions are necessary. Norms, rituals, laws, the whole list of ways that we say, out of the universe of possible behaviors, we're going to draw a relatively small circle around the acceptable ones.
He said the group structure is necessary to defend the group from itself. Group structure exists to keep a group on target, on track, on message, on charter, whatever. To keep a group focused on its own sophisticated goals and to keep a group from sliding into these basic patterns. Group structure defends the group from the action of its own members.
The Adult section here, the PPR section here, and the autism politics and activism area all meet the requirements pointed out in the article above. It's interesting because they are like separate countries in a continent, that some don't venture out of.
The advantage here is there is enough interest in the website, to have significant discussion in all three areas to keep people bound by the common interests or "enemies".
I think on a smaller website, one common interest or enemy may be necessary for survival of the group structure.
So when people are doing this, it may have more to do with the human group nature need for a common interest or enemy, than what the actual merits or non-merits of the enemy are.
27 Sep 2011, 6:44 pm
Very interesting insights.
Isn't the Internet amazing. Thanks Al Gore!
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
http://www.facebook.com/pages/JohnScott ... 8723228267
27 Sep 2011, 7:00 pm
Isn't the Internet amazing. Thanks Al Gore!
And we can thank Alan Turing for computer science!
http://en.wikipedia.org/wiki/Alan_Turing
Never knew who that was, until the new member here, brought up the information about this famous individual.
He is another one of those famous individuals who is considered to have had Aspergers.
27 Sep 2011, 7:48 pm
Isn't the Internet amazing. Thanks Al Gore!
And we can thank Alan Turing for computer science!
http://en.wikipedia.org/wiki/Alan_Turing
Really? Hmm, how interesting.
Well, I don't think the father of computer science liked me very well. Ha ha.
Thanks for your contributions, Alan.
Never knew who that was, until the new member here, brought up the information about this famous individual.
He is another one of those famous individuals who is considered to have had Aspergers.
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
http://www.facebook.com/pages/JohnScott ... 8723228267
01 Oct 2011, 11:06 am
It seems Dana Marnane used the interview to emphasize a shift in Autism Speaks' understanding and representation of autism.
This really seemed to frighten a lot of people!
Rubbish! How on Earth did you come up with this? People were not frightened by what she said. We just think that she is lying. Big difference and no one claimed otherwise. Stop misrepresenting the facts. This is poor writing.
What YOU consider desired results and attainable results…when working with such an organization is completely different for many. We do not trust nor consider their values compatible to ours. Do not think that you know our minds better than we do. It is arrogant and counter-productive.
Squabbling or debating? Do not misrepresent the position. It is poor writing.
OK here is a question.
Let’s say that we believe (due to Autism Speaks previous form and the fact they still talk about Autism in such terms as Epidemic), then IF they SAY they are going to do this or that, they may be lying or may not be. Who rings the bell to signifies that they are being honest and are worthy of trust? Abhorrent action in the past would lend their new words little credibility so why OUGHT we entertain them? I am not a sucker or a mug and I do not trust quite so easily sly and well crafted words by the PR department. You do though.
This is an unrealistic stance you are misrepresenting the situation to polarized join them or destroy them and indicating it is a must to do one or the other. It is not true. It is poor writing.
Why does this matter?
I think they are lying and misrepresenting themselves and their intentions and attitudes to the people they “Speak” for.
Some people seem to believe that winning popular favor and support is not a positive goal, but I would have to ask them, "What is the ultimate goal of the autistic community? To rule the world with an iron fist? To rid ourselves of everyone who thinks differently than us?"
Sounds fine so long as we do not deal with an organization that has likened us to being monsters behind a leaden shell, part of an epidemic, likens Autism to AIDS or Cancer, lies to vulnerable parents that they will ‘cure” their children of Autism through removal of mercury (just to abandon them later after getting rich of the financial support of these same desperate parents).
Is this what you mean? No I did not think so either.
If we want to live as respected and valued members of society we should really work on making our cause a bit more attractive and compelling to people of all sorts.
Again stop with the assumptions that in order to do these things that you are alluding to that it obliges us to deal with Autism Speaks. There is nothing that says we must.
This is polarized thinking and badly misrepresenting things. This is poor writing and not compelling to anyone with a lick of common sense.
Was it ever “war”? Really? Is not joining/interacting with Autism Speaks “warring” or even necessary? No it isn’t. You are misrepresenting things again. Why are you doing this? It is rather transparent and stupid. So why do it. It also reflects rather poorly on your writing.
You may love Autism Speaks and see great opportunities and so on. Great! Go for it. Do your thing there but stop misrepresenting things and browbeating us or crying when we simply do not agree with you.
01 Oct 2011, 12:42 pm
Autism Speaks get $MILLIONS and, if you look at how well they pay themselves, maybe they don't care so much about where the charity dollars go, so long as they keeping getting them. That's perfect because then they can be persuaded to help adult autistics. So long as they aren't single-issue their priorities can be altered.
It's credit to angry protesters that Autism Speaks have stopped pushing the 'cure' angle, but we need people like TM to help Autism Speaks realise where they should be spending money. Both are necessary.
01 Oct 2011, 2:02 pm
It seems Dana Marnane used the interview to emphasize a shift in Autism Speaks' understanding and representation of autism.
This really seemed to frighten a lot of people!
Rubbish! How on Earth did you come up with this? People were not frightened by what she said. We just think that she is lying. Big difference and no one claimed otherwise. Stop misrepresenting the facts. This is poor writing.
What YOU consider desired results and attainable results…when working with such an organization is completely different for many. We do not trust nor consider their values compatible to ours. Do not think that you know our minds better than we do. It is arrogant and counter-productive.
Squabbling or debating? Do not misrepresent the position. It is poor writing.
OK here is a question.
Let’s say that we believe (due to Autism Speaks previous form and the fact they still talk about Autism in such terms as Epidemic), then IF they SAY they are going to do this or that, they may be lying or may not be. Who rings the bell to signifies that they are being honest and are worthy of trust? Abhorrent action in the past would lend their new words little credibility so why OUGHT we entertain them? I am not a sucker or a mug and I do not trust quite so easily sly and well crafted words by the PR department. You do though.
This is an unrealistic stance you are misrepresenting the situation to polarized join them or destroy them and indicating it is a must to do one or the other. It is not true. It is poor writing.
Why does this matter?
I think they are lying and misrepresenting themselves and their intentions and attitudes to the people they “Speak” for.
Some people seem to believe that winning popular favor and support is not a positive goal, but I would have to ask them, "What is the ultimate goal of the autistic community? To rule the world with an iron fist? To rid ourselves of everyone who thinks differently than us?"
Sounds fine so long as we do not deal with an organization that has likened us to being monsters behind a leaden shell, part of an epidemic, likens Autism to AIDS or Cancer, lies to vulnerable parents that they will ‘cure” their children of Autism through removal of mercury (just to abandon them later after getting rich of the financial support of these same desperate parents).
Is this what you mean? No I did not think so either.
If we want to live as respected and valued members of society we should really work on making our cause a bit more attractive and compelling to people of all sorts.
Again stop with the assumptions that in order to do these things that you are alluding to that it obliges us to deal with Autism Speaks. There is nothing that says we must.
This is polarized thinking and badly misrepresenting things. This is poor writing and not compelling to anyone with a lick of common sense.
Was it ever “war”? Really? Is not joining/interacting with Autism Speaks “warring” or even necessary? No it isn’t. You are misrepresenting things again. Why are you doing this? It is rather transparent and stupid. So why do it. It also reflects rather poorly on your writing.
You may love Autism Speaks and see great opportunities and so on. Great! Go for it. Do your thing there but stop misrepresenting things and browbeating us or crying when we simply do not agree with you.
It's easy to say an organization is lying, without evidence. It's harder to get answers.
We have answers now thanks to the brave efforts of Tambourine man's efforts in the face of his own personal adversity against others, that attacked him with unwarranted personal attacks for making a neutral effort to get questions answered provided to him by his peers.
Because of his effort we have a written record of what autism speaks position is now, and it has changed from the past. They can be held accountable for their words, and it is easy to judge them by what they do in the future, as to whether or not they meet what they stated in the interview.
Before the interview, there was nothing to hold them accountable for in regard to their postions. Now there is. That is a significant accomplishment, that has become reality because of Tambourine man's efforts.
Anyone can call someone a liar, it takes no effort, and you have provided no evidence that Autism Speaks has lied about anything other than a personal opinion. If you need clarification on any points made in the interview, an open line of dialogue is available for those clarifications.
While you may criticize the individuals writing as poor, go to his facebook page, if you like where his writings have been presented, others don't agree with you on that point. The comments reflect an inspiration to others through his words for others with autism. There is no greater, compliment than that, for someone's efforts at writing.
People continue to try to tear him down for his efforts, they are easy to defend with the facts as presented.
01 Oct 2011, 4:24 pm
well i definatley wouldnt say T man's writing is poor at all,i dont get that.but i would agree that althouh i dont think autism speaks bluntly lied.i would be sceptical,maybe they stretched the truth or didnt tell all there secrets
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Forever gone
Sorry I ever joined
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