Wikipedia editors allege bias and bigotry against AS

Page 2 of 4 [ 57 posts ]  Go to page Previous  1, 2, 3, 4  Next

VMSnith
Snowy Owl
Snowy Owl

User avatar

Joined: 26 Nov 2007
Gender: Male
Posts: 125

28 Nov 2007, 10:06 pm

KBABZ wrote:
I'll take this point now to say that you're a unique person yourself. You're more than just someone who comes on the site every so often and says "I could really use some help in this survey for a University no-one's heard of!". You actually made yourself a member, and I feel glad that you chose WP as the site to come to, rather than, say, CAN.

Speaking of which, I'm sure the WPteers would have a few things to say on the CAN and Autism Speaks wiki pages that'd get taken off because they're more opinion than fact! I'm wondering what your stance is on the matter, if you have one...

Or am I being too nosy?


Thanks to KBABZ for the warm welcome, and to WP at large for their energetic response.

My stance on CAN and Autism Speaks is that while both organizations have done some good for some people, the advertisements I've seen produced by both are reprehensible beyond words. Non-autistic aspirants to the role of Autistic Spokesman, and what they say is dehumanizing in the extreme. (Not that I have any strong opinions on the matter :)

Fortunately, neurodiversity is evolving from opinion to scientific fact, thanks in large part to people like Simon Baron-Cohen.

Now getting people to listen is ... an open problem :)



Myrkabah
Sea Gull
Sea Gull

User avatar

Joined: 24 Nov 2007
Gender: Male
Posts: 217

28 Nov 2007, 10:10 pm

VMSnith wrote:
The third point I wish to make is I was up all night performing double-blind, randomizing testing and have concluded that both 'Zwerfbeertje' and 'Myrkabah' are beyond human capacity to spell without cutting-and-pasting. Which, now that I think about it, makes for an amazingly effective google search :) ....


Heh, it's also beyond human capacity to pronounce apparently. I'm the only person who pronounces it the way that I do, to my knowledge.

It's good that it makes a unique search - since I'm a DJ, it makes me easier to find. I have a friend who's DJ name is "Kri", and the first result for his name that actually pertains to him is somewhere on the 20th page of results, I think.



Myrkabah
Sea Gull
Sea Gull

User avatar

Joined: 24 Nov 2007
Gender: Male
Posts: 217

28 Nov 2007, 10:11 pm

VMSnith wrote:

My stance on CAN and Autism Speaks is that while both organizations have done some good for some people, the advertisements I've seen produced by both are reprehensible beyond words. Non-autistic aspirants to the role of Autistic Spokesman, and what they say is dehumanizing in the extreme. (Not that I have any strong opinions on the matter :)


Could you elaborate some on this? I have not heard of either of these organizations, and am completely unfamiliar with them or the advertisements.



KBABZ
Veteran
Veteran

User avatar

Joined: 20 Sep 2006
Age: 33
Gender: Male
Posts: 6,012
Location: Middle Earth. Er, I mean Wellywood. Wait, Wellington.

28 Nov 2007, 10:18 pm

Heheh. I have a story named Outcast, which has a section that focuses around an Aspie/Autistic character named Kipo. The catch is that it takes place on another planet with a fictional alien race. I take advantage of this futuristic setting and have The Cure come out, and Kipo's Mum does everything in her power to make her take it. Her dad, on the other hand, is the exact opposite, and they eventually divorce.

Kipo came to my mind after reading Mark Haddon's Curious Incident of the dog in the Night-time, where I wanted to have my own Aspie character. Upon reading of the inconsistencies (such as his extreme stereotypical personality) I wanted to do a better job with Kipo, and also explore how he could be different, what with being an alien. For instance, she isn't hypersensitive all over, rather in specific areas. Her shoulders have extreme negative hypersensitivity, whereas her feet have extreme positive hypersensitivity. The rest of her body is a transition point.

Anyways this is rambling off the topic... erm, yeah, wiki, it's uh... so good and, stuff...


_________________
I was sad when I found that she left
But then I found
That I could speak to her,
In a way
And sadness turned to comfort
We all go there


SheDevil
Blue Jay
Blue Jay

User avatar

Joined: 21 Apr 2006
Age: 65
Gender: Female
Posts: 79

28 Nov 2007, 11:39 pm

I hope you don't mind me jumping in here, CAN is Cure Autism Now - what I have heard Aspies call curbies. Autism Speaks takes the position that mercury (thermisol) is the source of ASD. Both organizations share the same homepage, so I am unclear on their differences. I am sure someone will correct me, but I believe this is the the organization the president of NBC started when his own granddaughter was diagnosed ASD (profound, I think).

The mission statement from their site.....

Quote:
Policy

Autism Speaks plans to strongly support a multidisciplinary research agenda on environmental exposures and autism. We believe that projects acknowledging the role of gene-environment interaction and incorporating markers of exposure susceptibility and etiologic heterogeneity will be the most productive in the long-term. Given present knowledge, there is a fairly broad array of neurotoxic environmental exposures worthy of further study but, moving forward, the type and timing of exposures under investigation should continue to comport with emerging developments in autism neurobiology.


In my research during this past year as an NT mom, I must say <holds breath> I am not impressed with Judy Singer, Maxine Aston, Tony Atwood, and yes, Temple Grandin (although she is the best in the group, IMHO). I see some very large money machines, some very powerful lobbies rolling with their own agenda. Can I point to any one incident? Well, not really......but I sense an agenda where the majority of the population it effects has not been polled. It's like the cash cows will tell you what is good for you whether you like it or not. Maybe I am just feeling empathetic for my kids and thinking this is what they are up against, I don't know. I know when someone makes assumptions about me, I find it offensive. Make sense?

Sorry, bad habit of mine going off on a tangent. I am just so relieved to see a post along these lines and see the response.....there is an Aspie message to be told and only you fine folks can tell it and take a stance. I am just the cheerleader.



KBABZ
Veteran
Veteran

User avatar

Joined: 20 Sep 2006
Age: 33
Gender: Male
Posts: 6,012
Location: Middle Earth. Er, I mean Wellywood. Wait, Wellington.

29 Nov 2007, 2:19 am

Myrkabah wrote:
VMSnith wrote:

My stance on CAN and Autism Speaks is that while both organizations have done some good for some people, the advertisements I've seen produced by both are reprehensible beyond words. Non-autistic aspirants to the role of Autistic Spokesman, and what they say is dehumanizing in the extreme. (Not that I have any strong opinions on the matter :)


Could you elaborate some on this? I have not heard of either of these organizations, and am completely unfamiliar with them or the advertisements.

Cure Autism Now and Autism Speaks are two American-based organisations aimed at finding a Cure for Autism (and thus Asperger's, as it is very similar). The Autism Speaks policy, quoted by SheDevil above me, doesn't actually say directly what their aim is except in their first sentence. The two organisations are so similar that they are in the process of merging as one (the site for example).

Cure Autism Now is the bluntest way to see their mission statement. They want to cure Autism, preferably now. However, and this is the important factor for many if not all on WP and other sites, they present it as being entirely negative. This includes videos of meltdowns only, and parents saying how their autistic child made them want to kill them and their kids (Autistic or not). Another example is their surveys. If they say, as an example, that "one in every 15 children is Autistic", not only is this shown with their negative take on it, but they also do not explain in any form that Autism is a Spectrum, and that you can get varying severities of it, from near un-noticeable to painfully obvious, intrusive, and generally how they perceive (or rather, present) it to be. As is well known by WP and other sites, either sides of the case is not common at all, and the middle is more often occuring than not (the middle can be considered Asperger's Syndrome).

Sadly, they do not accept this, and rather than tell the full story, they focus on the negative side of things. They also can sometimes be seen, on their forums, to make attempts at tearing down positive Autism/Asperger's stories (for instance, they have/had a thread about trying to prove that one of the contestant's of the latest America's Top Model does not have Asperger's. There's a WP thread about her which is a sticky in the Autism Discussion board).


Many WPteers would agree and accept that there are sad cases of AS and Autism out there, and that many of them would prefer to be cured rather than think and act as an Aspie or Autist. However, what CAN and Autism Speaks deny/fail to see is that many of us also do not, that we have minds of our own, and that we are appalled at the way that they represent us in the media and thus, the public at large. It could be considered a form of neurological racism, in my opinion.

EDIT: This is my opinion of it. Not fact.


_________________
I was sad when I found that she left
But then I found
That I could speak to her,
In a way
And sadness turned to comfort
We all go there


VMSnith
Snowy Owl
Snowy Owl

User avatar

Joined: 26 Nov 2007
Gender: Male
Posts: 125

29 Nov 2007, 3:24 am

Myrkabah wrote:
VMSnith wrote:

My stance on CAN and Autism Speaks is that while both organizations have done some good for some people, the advertisements I've seen produced by both are reprehensible beyond words. Non-autistic aspirants to the role of Autistic Spokesman, and what they say is dehumanizing in the extreme. (Not that I have any strong opinions on the matter :)


Could you elaborate some on this? I have not heard of either of these organizations, and am completely unfamiliar with them or the advertisements.


Yes, to add to what KBABZ said, Autism Speaks is perhaps most notorious for their film, Autism Everyday, http://206.252.155.61/media/d_200603_Ev ... 9_256k.wmv . This film shows desperate and miserable mothers with out-of-control autistic kids. One mother admits to thinking about killing her autistic daughter - in the presence of the girl. Three days after the release of this movie, a mother named Karen McCarron murdered her autistic daughter. I know, post hoc ergo propter hoc, but one still has to wonder.

Both organizations apparently began under the firm assumption that autism resulted from an environmental toxin, especially mercury (thimiserol) present in childhood vaccinations. That theory didn't pan out. Now autism looks genetic.

Which raises the spectre of a new "Cure" - selectively aborting fetuses whose gene sequences are less like theirs, and more like ours. Fortunately, the genetic basis of autism is proving diffuse, hard to isolate to one spot.

Good thing. After all, we've seen this "cure" before.

It marched into Poland in 1939.



Myrkabah
Sea Gull
Sea Gull

User avatar

Joined: 24 Nov 2007
Gender: Male
Posts: 217

29 Nov 2007, 3:32 am

VMSnith wrote:
Which raises the spectre of a new "Cure" - selectively aborting fetuses whose gene sequences are less like theirs, and more like ours. Fortunately, the genetic basis of autism is proving diffuse, hard to isolate to one spot.


Has anyone brought up the word "Eugenics" to describe this?

If not; why not?



VMSnith
Snowy Owl
Snowy Owl

User avatar

Joined: 26 Nov 2007
Gender: Male
Posts: 125

29 Nov 2007, 3:40 am

Myrkabah wrote:
VMSnith wrote:
Which raises the spectre of a new "Cure" - selectively aborting fetuses whose gene sequences are less like theirs, and more like ours. Fortunately, the genetic basis of autism is proving diffuse, hard to isolate to one spot.


Has anyone brought up the word "Eugenics" to describe this?

If not; why not?


Not that I know of. Maybe it's time to start.

There has been some mention in the press : "Would you have allowed Bill Gates to be born?"

http://www.msnbc.msn.com/id/7899821/

Now, about that wikipedia article .... ;-b



Myrkabah
Sea Gull
Sea Gull

User avatar

Joined: 24 Nov 2007
Gender: Male
Posts: 217

29 Nov 2007, 3:45 am

VMSnith wrote:



Now, about that wikipedia article .... ;-b


I'm getting there, I'm getting there. :P



Inventor
Veteran
Veteran

User avatar

Joined: 15 Feb 2007
Gender: Male
Posts: 6,014
Location: New Orleans

29 Nov 2007, 6:16 am

Wiki is useful but light weight.

As an old Free Range Aspie, 61 now, all this is new to me. No one asked my opinion, so I will give it.

There is money involved.

I have heard of the CAN film, and know of another, it was produced before 1939, maybe 1934-5, a means of altering public perception, and was run in all German movie houses. I think the title in English was, "Unworthy of life." It showed the defective, showed they were nothing but a burden on the living. It showed what went on in mental hospitals, homes for the impaired, people who were washed, dressed, fed, well cared for, but would never become anything but a burden. Useless mouths, I recall they were called.

Before my recent discovery of WP, I knew nothing of AS, I now remember images, a woman, talking to herself, flapping her hands. I only do that sometimes.

By 1936-37, all of these people were dead. CAN is running the same propaganda.

The medical reports, death certificates showed Influensa and Colera epidemics ran through mental hospitals, home for the defective, killing everyone, then it struck the prisons, those with a terminal illness, and nursing homes.

Soon after the camps were opened, all people who did not fit the social ideal.

By 1939 all of the medical personal were available for war wounded. All of the medical centers empty and waiting.

It was not forced on the people, just suggested, in film, and happened quietly in less than five years.

There was no famine, the economy was strong, the Mark rising in value. Getting rid of useless mouths funded the Autobans, rebuilt cities, rail, water, and from what I hear, art, culture, and party time, leading up to the war. Their technology lead the world.

There is a bit more than opinion behind my anti-cure stance.

Facts lie. Fair and balanced lies are the worst. Neutral is censorship. At least two major points of view, a half dozen minor, to cover most subjects, let me cite WP here, diverse opinion in action.

Sometimes Wiki is great, someone who knows their stuff tells all. It may be very one sided, just what I want. Where opinions differ, it turns to mush.

There is a lot more money paying CAN and Autism Speaks.

When two views conflict as much as ours do, neutral does not work. I would suggest two pages, for and against. If we allow others to define us we lose. If we accept neutral we lose.

They are working public opinion. We do well with those on the spectrum, family, teachers, a limited group.

In the public opinion we are being equated with Downes Syndrome, and they do not get born any more.

Aspies should speak out, and let the world know they are worthy of life, that their mouths are not useless.

Germany lead the world in art, culture, technology, science, till they got rid of the Aspies, since then they have been neat and orderly, but have lost leadership in all fields.

We are the yeast in your bread!



VMSnith
Snowy Owl
Snowy Owl

User avatar

Joined: 26 Nov 2007
Gender: Male
Posts: 125

29 Nov 2007, 8:21 am

An interesting suggestion, Inventor. I believe such a split is called, in wiki parlance, a POV-fork (Point Of View-fork). Not a bad idea, really.

A terribly ironic twist is that Asperger ran a school for aspie kids in Austria under the Nazi regime. These kids remained protected as his research subjects, and some believe that was intentional. Asperger's thesis on "Autistic Psychopathy" states over and over again - on the first page of each new section - that these are talented and useful people.

He wrote,

Quote:
‘To our own amazement, we have seen that autistic individuals, as long as they are intellectually intact, can almost always achieve professional success, usually in highly specialized academic professions, often in very high positions, with a preference for abstract content. We found a large number of people whose mathematical ability determines their professions; mathematicians, technologists, industrial chemists and high-ranking civil servants.’
Asperger H. Die ‘autischen Psychopathen’ im Kindesalter. Arch Psychiatrie Nervenkrankheiten 1944;17: 76-136.


Then Asperger's clinic was bombed by the allies, and his research lost in the wreckage of post war europe, save for one copy at the University of Cambridge.

Which was finally resurrected by Lorna Wing fifty years later in his name, but in a form he would certainly find appalling.

You just can't make this stuff up. If irony were oranges, we'd all be drinking a lotta smoothies right now ...



SheDevil
Blue Jay
Blue Jay

User avatar

Joined: 21 Apr 2006
Age: 65
Gender: Female
Posts: 79

30 Nov 2007, 10:05 am

Quote:
Aspies should speak out, and let the world know they are worthy of life, that their mouths are not useless.


Inventor, this is a point that has been a focus for me over the past year. How, do you get Aspies motivated to speak out? I sometimes get the feeling I am more indignant than some Aspies.....and on Aspie issues! I won't bore you or anyone else with some of my travels in the AS world, but in all honesty, I see many Aspies so accepting of limits placed on them, but not by them. And, my sense of fairness kicks in, sensing the Aspie has been wronged, yet I am the only one that is riled. I will acknowledge there are some angry Aspies, but to the extreme. It's things like challenging Wiki or getting someone to send an email to a reporter pointing out errors in an article that puzzle me - when no one reacts. As I stated to someone, I am ready to march for your (AS) cause, but I need you to be there, too. So, is it going to take a tragedy to see motivation?

(Sorry Mr. Smith, not an attempt to hijack - it's not often I hear a comment about something that is near and dear to my heart).



VMSnith
Snowy Owl
Snowy Owl

User avatar

Joined: 26 Nov 2007
Gender: Male
Posts: 125

30 Nov 2007, 1:57 pm

No hijacking taken :) When a subgroup of the population is misrepresented in a negative way, we call it bigotry and let's call it by its real name - hate speech.

We've seen it with respect to "race" (a funny term when you think about it, there is just one human "race") and 'racial' minority groups have become amazingly vigilante about one thing : when a public statement is made demeaning to a racial group, there are immediate consequences. You demean a minority group publically, and you get called on it, you get fired, you are going down. Because with freedom comes responsibility.

I support the right of the bigot to say anything he wants. And I support of the right of others to respond in any lawful way they wish, including boycotting his employer and picketing his house.

More recently, self-protecting "minority" groups have transcended the traditional bounds of 'race' and gender and now include sexual orientation, disability and even age.

As for neurodiversity, we're just not there yet. Perhaps because we're so new. We're african americans in the deep south in 1956. There isn't much we can do right now, we don't have any power yet and nobody fears a reaction from us.

But there is one thing. We can speak out. Whatever the outcome. Nobody's really going to listen, they may just briefly notice. But that's enough. That's how it starts.

Martin Luther King was - in my estimation - the greatest American, for one simple reason. He answered bigotry with the truth. Not water cannons nor police dogs nor even the bullet he knew was coming dettered him from just speaking the truth.

"In a time of moral crisis, silence is treachory." - MLK



ascan
Veteran
Veteran

User avatar

Joined: 22 Feb 2005
Age: 53
Gender: Male
Posts: 2,194
Location: Taunton/Aberdeen

30 Nov 2007, 3:04 pm

VMSnith wrote:
...Because with freedom comes responsibility...

You don't know the meaning of the words.

I'll tell you something: people like you contribute to the situation where people like me are unable to disclose, IRL, they have AS. People like you condemn people like me to a lifetime on the edge of society. If you want to make a political career then do us all a favour and stick to gay and ethnic-minority rights.



VMSnith
Snowy Owl
Snowy Owl

User avatar

Joined: 26 Nov 2007
Gender: Male
Posts: 125

30 Nov 2007, 4:01 pm

ascan wrote:
I'll tell you something: people like you contribute to the situation where people like me are unable to disclose, IRL, they have AS.

I hope not.