No Stereotypes Here

Archive for September 2009

Kat, an autistic woman in a wheelchair, needs help to repair her wheelchair.

Quoting from her facebook:

I need help. The literal kind, the figurative kind. I don’t know if this is about to offend people but, my wheelchair was damaged by the man that tried to kill me. I have asked for help from local charities and the answer is “Not unless you move into a nursing home.” I am 25, I am able to live, and I need help not to be locked away. I need 500 dollars to cover the cost of batteries and the parts needed. I admit I cannot ever repay anyone who helps me, nor can I ever express the gratitude that I feel at even feeling that I can ask for help. This is my chance to get my freedom back. That or I have to wait for four more years for a new wheelchair. (From her facebook)

So please donate!!

http://widget.chipin.com/widget/id/90ee84f91b4e4e0f

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From what I have seen from history, there are two methods of activism: aggressive and passive.

Aggressive is the destructive kind, the marching and violent protests filled with hateful speech. It’s the riots with fires and smashed windows, with fights and police firing on the crowds. It is an out-pour of rage in the most destructive manner.

The problem with aggressive and violent protesting is that it often becomes a matter of revenge, of getting even. Strong emotions like anger and rage are very hard to stop, especially when echoed back by people nearby, and often leave a person tired and drained.

However, I don’t believe in not saying anything if an injustice has been done. Both as a human being and as a Christian, it is my duty to actively counter injustice.

Now, I come from pacifist family, so I am more inclined to passive activism. Passive is, well, more passive, but no less vocal. It’s the non-violent protests, where protesters refuse to give in to their hatred and strike back, but are no less willing to back down. It’s standing up for what you believe in and not lowering yourself to crude violence.

Given that I’ve quoted him before in previous posts, one of my favorite non-violent protesters is Mahatma Gandhi. Some of my favorite quotes from him are:

“Be the change you want to see in the world.”

“Nobody can hurt me without my permission.”

“Whenever you are confronted with an opponent. Conquer him with love.”

“The weak can never forgive. Forgiveness is the attribute of the strong.”


I work hard to maintain grace and forgiveness in order to be a non-violent activist. So it takes a lot for me to even consider aggressive activism. Thankfully, in real life, it is easy to draw the line between violent and non-violent protesting. Not that I’m not tempted in the midst of my frustrations, but the actually doing is different from thinking. After all, who hasn’t thought of devious or even cruel things to strike back at people who have slighted us? The difference is that while thinking these things isn’t nice, you aren’t the kind of person to actually DO them.

However, with the Internet, a new breed of protesting medium has been made, making it easier to protest. It is easier to spread around information, easier to bring attention to issues, plan protests, etc. However, it is also easier to give into the temptations of aggressive internet activism, the kind that weakness our position and makes it easy for the courts and the public to dismiss us as a violent rabble just looking for trouble. This includes personal attacks, “trolling” and generally making oneself out to be abusive.

I’m not saying this to criticize anyone’s actions. This is merely a reminder to myself as well as others to act in a manner that does not jeopardize our position. We can shout out our slogans, stand in protest and spread information, but we should refrain from taking revenge, violent actions or actions that could be considered abusive or harassing.

It’s not something that’s easy. Heavens knows it’s not always easy, especially on the internet with the presence of trolls roaming our midst. But we should remember that the public is also watching us, and to conduct ourselves in a manner that proves that we are respectable people calling out on an injustice. By our setting the example, the public will be more favorable towards us than if we were to just strike out in our fury.

That means, of course, not feeding the trolls.

For more information about trolls, I would highly recommend this post by Genderbitch: Trolling: The Ultimate Activist Trap as well as this post by Bev What Kind of Troll Am I?

I sent this to the Autism Speaks contact email contactus@autismspeaks.org. I’m also posting this here as an open letter.

To Suzanne Wright and whom it may concern in Autism Speaks,

The latest video of your organization Autism Speaks, “I am Autism”, completely disgusts me. It present an inaccurate presentation of autism, as if it were some disease, a blight or a growth that can be torn out of a person. Autism is a part of who I am. By presenting autism in the way that you have, not only have you demonized autism, but you have demonized and victimized autistic people. You show no compassion or empathy for autistic people in the way that you have represented us, or rather, the way in which you lack to represent us.

Because actually, the video doesn’t even address autistic people at all, only “autism” as a child-stealing disease and our parents. No once in the video do I see anything about how autistic people live, only the struggles and trials of our parents, putting them high on a pedestal as if they were all-suffering saints. While yes, our parents face struggles, they do so alongside us, and just because we are autistic does not mean that our lives are sinking pits of misery and tragedy. We have our own challenges and troubles, joy, happiness and love, just like non-autistic people.

The information about parents is also false, based on inaccurate presentations that are ignorant at best and outright lying at worse. There has been no evidence that families with autistic children have higher divorce rates, are more in debt, or become socially withdrawn. Yet the video continues to spread false information about our lives.

But that’s not the end of it.

Suzanne Wright, you LIED to parents in you personal appeal for their videos (released August 6, 2009 on the Autism Speaks YouTube channel). In the video, you states that the video will “[shine] a bright light on autism”. You give the impression of a positive video with an optimistic presentation of autism and autistic people. The only “bright light” in the video is the determination of parents, the vilification of autistic people, and to donate to Autism Speaks’ bankbook is the only way to make our lives better.

So congratulations, you have just angered and pushed away the very people you claim to be helping, and have given us more reasons why we hate your organization. We are sick and tired of your corrupt practices. We are disgusted in the way that you have attempted to represent us. We are appalled, horrified and deeply resent everything that you do. Your name has taught us the meaning of hatred and loathing.

You say that Autism speaks and it’s time to listen. So you want autism to speak, okay then, you had better be listening because here’s “autism” speaking:

I am Autistic and you DO NOT speak for ME!

Never yours,
Corina Becker

Autistic Community Condemns Autism Speaks

ASAN issued the following press release today condemning Autism Speaks’ unethical and offensive “I Am Autism” advertising campaign. Please repost and redistribute widely.


Press Contacts:

Ari Ne’eman
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org

FOR IMMEDIATE RELEASE

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign
“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) – The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN). “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents’ embarrassment at their kids’ meltdowns is more important than autistic kids’ pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”

Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html
“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks
“I am Autism Speaks
I will steal your voice and make sure you can never speak for yourself.
I will steal your parents’ money and spend it on a residence on Park Avenue.
I will use demeaning language to degrade, pity and marginalize you.
I have declared war on you.”

Emily (Parent):
http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette’s? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate):
http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html

“Autism Speaks seems to think that parents’ embarrassment at their kids’ meltdowns is more important than autistic kids’ pain. They’re wrong in that, and they’re also wrong to suggest that donating money to Autism Speaks and trying to find a “cure” is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

Before I start, if you haven’t checked out the Asperger Women Association’s latest internet radio show episode “Autism and Changing the Language with Michael Buckholtz” then I suggest you do so now. It is an excellent discussion on the word “disability” when referring to autism, and how to go about to make a positive influence.

Onwards!

What has caught my attention was the release of a study on autism and a couple of articles documenting and commenting about it. From the Times blogs comes a post about the National Autistic Society coming off the fence , as well as the actual news article about the study and the implications of the results. All very good, nice and dandy. Yay for the press.

Ah, but of course, we have the blogging sphere. Left Brain/Right Brain refers to an excellent post by Mike Stanton, that includes a more inside look and observation, including study links! Because facts are facts, and it’s starting to get harder to play neutral.

Now, as we’re all cheering, Socrates from the New Republic keeps us honest by being brutal and surprisingly refreshing in interpreting the study’s results. Because there’s always a different perspective on things.

Personally, I can’t help but notice the large gap in the mens and women’s prevalence rates. 1.8 for men, and 0.2 for women. I’m trying to figure out whether the new concepts of autism manifesting differently in women was factored in when they did the studies.

You can find the actual studies here and the report released here.

Anyways, the newspapers do a little rounding (or as I think, adding 1.8 and 0.2) and proclaim an autism prevalence of 2%, in adults as well as children. That we know of, I might add. While it’s a nice number, I’m thinking it’s probably higher, but that might just be me.

Either way, a 2% prevalence is larger that some categories of Myers-Briggs Personality Types.

(for the record, I’m ISFJ/INFJ/INFP. Primarily INFJ/P)

Lately, my attention has been brought to the writings of a Mrs. Ginger Taylor, who describes herself as the following on her AoA article:

Ginger Taylor holds a master’s degree in Clinical Counseling from Johns Hopkins University that Dr. Gorski thinks she should not mention so much. She is an autism mom with a really messy house because she believed that those pretending to serve man kind actually were and spent way too much time trying to get them to look at evidence that a generation of children are being severely injured by over vaccination and pollution. She blogs at Adventures in Autism, where she will be absent for a bit in order to clean up her life after all the time and energy she has wasted on posers who don’t give a shit about sick children. Her current projects include praying to God to take away her bitterness and anger, and playing Farm Town with her sons where her blueberries are at 23%.

Her article on the AoA site is what can be summed up as a general complaint at the lack of concern and appropriate response to a letter she wrote to several professionals. She has posted the exchange on her blog HERE. She has mentioned responses to this exchange by people who weren’t originally addressed in the original letter. Well, to that, I’ll have to remind her that when something is posted onto the internet, it becomes part of the public domain, of a sorts. Yes, one can claim copyright laws, but once published publicly, everyone can see it and everyone is allowed to comment.

And so, this individual, who happens to be autistic, will comment and examine Mrs. Taylor’s words.

Okay, first we have the usual story: child gets vaccines as per doctor’s orders, child is diagnosed with autism, mother believes the vaccines caused her child’s autism and feels betrayed by science-based medicine.

May I point out that Mrs. Taylor has a Master’s in Clinical Psychology? This means that not only has she gone through the undergraduate program, but she has also gone through the graduate program. The next level in post-secondary education is doctorate, however, that is for people aiming for certain jobs, research and interests. An undergraduate degree develops critical thinking skills, the ability to take information and apply it to different situations and be able to argue one’s stance. A Master’s degree means that a person has written a thesis and successfully presented a valid argument. Someone working towards their doctorate degree would then present work that is potentially publishable in peer-reviewed journals, and then begin on, well, doctorate work. The particulars of this system may differ in the various departments, however, in every department, an undergraduate degree depends on the ability to do appropriate research, make the right documentation and present critical thinking skills. Also, I might add, that university libraries are not reserved for just current students, but are open to every person in every field to do research and expand on information. This means that should Mrs. Taylor wishes, she can go to her public university library, do research and have the skills to properly cite and document the information.

Let’s look at the sources of information that Mrs. Taylor has read about autism:

Vaccine package inserts, a few studies, AAP/CDC web sites, a few media accounts

Hmmm, I can’t help that she doesn’t mention which studies and which media accounts she has been reading. Given that she refers to the question of whether “autism, an autoimmune disorder where in the immune system attacks the central nervous system” being caused by the Hepatitis B vaccine, I can’t help but suspect that she did not read any official documentation about autism, or even looked it up in the DSM-IV-TR. If she had done so, as someone with a Master’s in Clinical Psychology would be able to do since even an undergraduate in Psychology would be able to do so, then she would know that autism is NOT an autoimmune disorder, but is considered to be a Pervasive Developmental Disorder that is neurological.

She then refers to her pediatrician not looking over highlighted vaccine inserts and the lack of response from the American Academy of Pediatrics, apparently using her experiences as evidence that the entire field of health professionals are inconsiderate of parent’s concerns regarding vaccines.

Mrs. Taylor then cites David Kirby’s Evidence of Harm. I point out here that Mr. Kirby is a journalist; it’s his job to sensationalize every little thing that may turn out to be a selling story. So, at best the information that he provides is ignorant and at worse is downright lying.

From what I can tell from the research that Mrs. Taylor has been doing, the data in which she is using is also quite dated. Meaning, that the way the industry ran many many years ago is not necessarily the way in which it runs today. For example, safety protocols are always being re-applied, processes are updated and knowledge is constantly being discovered. I can’t help but notice that many studies that are being quoted are quite dated and therefore are incorrect in today’s context. Not that she mentions very many studies or where she is getting most of her information, as an academic should.

However, the rest of her post is largely her grievances over individual science journalists and bloggers whom disagree with Mrs. Taylor on 1) the definition of autism 2) the probable cause of autism and 3) the treatments and supports that autistic people need. Apparently, some of these people have viewed her as yet another of the crowd that believes mercury/vaccines cause autism and have treated her un-courteously and condescending, causing her to be very angry and frustrated. She excuses her public display of behavior with

And that anger apparently began to push me over some line somewhere, because today, three weeks later, I just don’t care about giving myopic, immature, biased and unprincipled “science writers” the benefit of the doubt or a hundred more chances any more.

As she reports, Mrs. Taylor “asked them to do some self-evaluation. Demanded really” and the response was the following:

The response from “them” to my challenge that their dismissals, their insults, their lack of insight into themselves, their inability to self-correct and refusal to examine and address “our” concerns might be the problem, was to dismiss me, insult me, demonstrate an extreme lack of insight into themselves, display an inability to self-correct and to refuse to examine and address my concerns.

They responded to my accusations of failing to live up to the standards of their chosen industries, by failing to live up the standards of their chosen industries.

I called them biased, and to prove me wrong, they showed me their bias.

Giving Mrs. Taylor the benefit of the doubt, I followed her link to the letter she posted and sent to Lori Kozlowski. At the beginning, it seemed like a very reasonable response to Mrs. Lori Kozlowski’s article. However, the letter slowly becomes what can only be described as an attack at the science-based medical community at a whole, based on the actions of a few skeptics and critics of the vaccines-causing-autism manufactured “controversy”. Mrs. Taylor, in presenting her arguments, fails to present proper documentation for her sources and barely acknowledge or even consider the scientific data that has been gathered since the first time that these concerns were addressed to scientists in 1998, over ten years ago. When she does acknowledge the studies that have been done for her and others benefit, she does so to remark on supposed behavior of the scientists involved and does not even address the findings, never mind treat the subjects in a professional manner befitting of her academic status.

Instead, in her letter to a few of the journalists and skeptics, she makes a comparison of science with religion, calling on scientists to have a religious experience in their fields, forgetting that the nature of science is not to be about the individual, but rather about the entire population as a whole, and that scientists may not even be religious. Actually, it’s very likely that the majority of scientists are not religious and such a demand for soul searching and conversion to faith-based studies is quite inappropriate for the field.

I am not going to address the issues concerning the studies, because I am not a scientist. Nor am I a journalist, or a science journalist/blogger, whose job is to write about the latest science news in an attempt to relate said news to the general public. However, as an individual, I can see the harm and immense cost (that would have to cover entire continents to be done properly as has been stated) in attempting to do some of the studies demanded, not to mention irresponsible to put so many people at risk of disabling and even fatal diseases. However, if they want to argue the specifics of such a study, they should address this and work with scientists to achieve a reasonable compromise, since previous scientific studies in the past have not satisfied people such as Mrs. Taylor.

Now, looking at Mrs. Taylor’s conduct, in the entire letter, I did not see evidence of an objective academic who was using her critical thinking skills and acting in a professional manner in addressing other academics. I did not see the level of maturity expected for her age, the professionalism expected for her profession, nor the proper documentation for citing and the thorough research that is necessary for a Bachelor’s degree, never mind for a Master’s degree.

Returning to the entry with Mrs. Taylor’s documentation of the exchange, she continues to respond subjectively to the responses that she received to her very subjective letter, and thus “proves” to herself and the rest of her reading public how dismissive the scientific journalism community and the science-based medical community is towards concerned parents. However, I may point out that no where has Mrs. Taylor demonstrated that these few individuals that she addressed actually represents the entire fields she attacks, nor has she demonstrated the objective skills and professionalism that these few apparently “lack” in their responses to, not professional or academic literature, but a personal letter.

Neither does Mrs. Taylor frame her concerns in the contexts to actual data gathered within the last ten years of studies that does address her concerns, rather dismissing the data as being made up information based on the fact that pharmaceutical companies fund the research, and with no regard to the actual scientific processes that renders funding sources as being irrelevant. Instead, Mrs. Taylor fires off her questions towards journalists and science bloggers without citations and references other than to her own blog and once to a newspaper article, and does not even a proper give a frame of reference.

To her credit, one of the responses that Mrs. Taylor was blunt and perhaps a tad unprofessional (to which Mrs. Taylor response with a barrage of questions, forgetting that such studies are easily accessible through university libraries and that in all science-based studies, there have been no indication of autistics having any unusual levels of health difficulties, including autoimmune, seizures and gastrointestinal issues, than the general public), in; however, the rest of the responses she received that she displays shows journalists responding appropriately to questions about their articles, their writing practices concerning science news, and a plain all-out attack on themselves as professionals. At one point, Mrs. Taylor urges Lori Kozlowski to quit journalism, as well as Ginny Hughes when she politely and nicely asks whether any of Mrs. Taylor’s readers would be interested in a poll that might actually be in their favor.

In general with her letters and responses, Mrs. Taylor declares that not only is the LA Times “dying”, but “…morality, honor and wisdom in scientific journalism is dying” due to the actions of the journalists to favor science-based medicine. She finishes her entry with one last jab at the original target, Chris Mooney, who was the author interviewed in Lori Kozlowski’s article profiling his book, claiming that he and other scientists were trying to sell their “view of science” and that she “was their audience”.

Not exactly Master’s degree material, Mrs. Taylor, and not very professional of you, should you be wanting to present yourself as better than your opponents.
.

Posted on: September 16, 2009

I posted this on Countering Age of Autism , in response to a reference to the belief that there is a conspiracy in the government and companies to use vaccines to turn the entire population autistic.

I’m still trying to figure the whole conspiracy theory out, as much as I can.

As fair as I can tell, the only motivation for “making everyone autistic” is for profit. While yes, there may be some greedy individuals in the government and industry; however, this is not a bushel of apples where one bad apple corrupts the entire lot.

Also, the point about adult vaccines making people autistic is somewhat ridiculous. If there was a conspiracy of this nature, then making “normal” people autistic in their adult and senior years is rather stupid. Think about it, an NT adult goes in for his or her vaccine, and within 10 days, suddenly stops being NT and diagnosed as autistic? Um, I think people would notice, and a good conspiracy is one that no one knows about.

Seriously. I know that some governments aren’t as competent as we’d like, but I doubt that they’re THAT incompetent.

Also, generally from accounts and experiences of others, adult autistic diagnosis tends to go similar to this (if it helps, imagine this with hand puppets):

person sees doctor “Gee doc, I’ve been having these problems all my life.”

doctor listens to person and directs person to appropriate specialist.

specialist asks more direct questions “I think you have [insert ASD], because of this, this and this”

person “thank you, now I know what is going on and can get the appropriate help if I need it”

ta da, adult diagnosis of autism. It kind of isn’t a spontaneous regression into autistic traits.

September 13, 2009 1:50 PM



  • None
  • Corina Becker: Hi Anonymous person who apparently doesn't feel like giving me a name to address, and thus hides behind anonymity!!! I never said the federal gov
  • Anonymous: I think that it is about time something is being done federally to help those with ASD to get much needed therapies for their disability and YES I do
  • Corina Becker: Hi Janine! Melody reads here? Awesome. I honestly had no idea she was aware of this blog.And thank you so much, I'm glad both of you like the bl

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