[Reposting this from August . After Climategate showed us that yes, there is provable bias, corruption and denial of inconvenient truths in the scientific community, and that the mainstream media is more than happy to roll with it, I think that this lengthy piece on just how bad things are bears a second read.]
Six years ago next week my youngest son got his 18 month vaccinations, DTaP, Hep B, Polio, Pneumo and Hib and then regressed into autism. Almost a year later I started this blog for the simple purpose of keeping a public daily journal while my son went through treatment on which there was not a lot of public information. I thought that others could read about what our experience was in evaluating whether or not it might be useful for their child.
But what began as a mother's journal has turned into a reaction to and an act of rebellion against the widespread corruption of the institutions whose stated purposes are to protect the safety, health and rights of individuals, to guide them in good decision making and to get to the truth of a matter and inform the public so that they can make wise choices; and the dishonorable behavior of many who man those institutions.
Because once upon a time I was a trusting consumer of the science and medical industries, and even a participant in them. I followed what I believed was their earnest advice, because I believed that they were working in my best interest, that they were working in the best interest of my children, and that they were upholding the basic standards of their professions that would protect them from gross error in their rendering their opinions.
I vaccinated my children as I was told to do.
I was very, very wrong to blindly trust those sources. Following their advice turned out to be as wise as taking a sledge hammer to my son and my family.
After my son's regression, I was told by all the supposedly reputable, vetted sources that I looked to that my son's regression could not have been caused by his vaccines. But that just didn't seem right to me, so I started reading. Vaccine package inserts, a few studies, AAP/CDC web sites, a few media accounts and I had a question that I could not find an answer to. That question was
So I printed out the vaccine package insert, highlighted the relevant parts and took it to my pediatrician, who didn't read it and didn't answer my question. But he did tell me to go ask the American Academy of Pediatrics. Which I quickly learned, does not answer vaccine/autism questions from parents.
And then I read Evidence of Harm and saw what a horrid sausage factory the medical research industry can be. And then I got online and started asking more questions. I quickly learned what a house of cards vaccine safety research was, that there was no safety test for the chemical cocktail that my son got on September 18th, 2003 (still looking if anyone knows of one), that there is no comparison study between children who are given the CDC vaccine schedule and those who are not, that vaccines are not tested against a true placebo, that children with my son's medical histories are not included in vaccine safety research hence that research cannot be applied to them, that vast conflicts of interest (both declared and undeclared) exist in those making health recommendations and overseeing product safety, that many of those same conflicted people claim that there is no connection between vaccines and autism even though the research required to make that statement has never been done, that these institutions regularly made contradictory , nonsensical , unscientific and easily disprovable statements for which they are never called out and that the media doesn't talk about any of this.
I learned that I had been robbed of informed consent.
And then I learned that there was no way for me to hold accountable any of the institutions or individuals who had participated in robbing me of informed consent. Pretty much my only recourse was to write to them and just have to deal with being ignored.
So I started writing about it.
And as I wrote about it, I was determined not to become like the people I was criticizing. Not to ignore my critics, not to overstate my case, not to treat people whose opinion (or personality) I didn't like as if they didn't count, to correct myself when I was wrong and to give everyone a fair shake and a hundred chances to correct their mistakes. To be earnest even to those who were not. To engage in civil discourse, even when I was really angry about something. To give people the benefit of the doubt that they earnestly want to get to the truth of the matter. All this is the hopes of allowing every chance for an actual coming together of "us" and "them" to figure out how peoples opinions differ so vastly on the vaccine/autism connection and in how to treat these kids.
I have not always succeeded in living up to that standard, but on the whole I don't think I have done too bad.
Along the way I have had the pleasure of engaging with earnest people who really took seriously whatever role they had in this debate. They understood that their opinions and actions had consiquences. They took criticism and had the ability to check themselves, because they understood that children's lives were at stake, so they had to be sure they were getting it as right as they could.
And then there are people like Chris Mooney, Sheril Kirshenbaum, Lori Kozlowski, Rosie Mestel, Thomas Maugh, David Gorski and Virginia Hughes.
About three weeks ago a friend sent me and article entitled " Bringing science back into America's sphere " by Lori Kozlowski in the LA Times. It made me really angry. Angry that the LA Times was printing such a frivolous article about a subject so important that greatly impacts the health and lives of almost every child on this planet, angry that Chris Mooney seemed to have no insight into the fact that the public's 'rejection of science' as described by him may have something to do with the vast corruption in the science industries and the public health agencies who regulate them, angry that the second most contentious issue in medicine (behind abortion) was treated as if its outcome was a forgone conclusion, and angry that tens thousands of parents and even well respected, well reasoned, seasoned medical professionals were treated as if they were neanderthals for believing that vaccines might have an association to autism. Angry that the LA Times was hosing this shallow and irresponsible discussion between these two obviously very young writers.
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.
I wrote to Lori Kozlowski, Chris Mooney and Sheril Kirshenbaum (with whom Chris wrote his book, Unscientific America: How Scientific Illiteracy Threatens Our Future) and posed the basic questions, 'Might not the expanding chasm between the scientific community and the American public be the fault of the corrupt science industries who have destroyed public trust? Might the public be walking away from you because you have treated them... us... so damn badly? When a community like yours (Mr. Mooney identifies himself both with Skeptic Brand Science and the larger science and science journalism industries) dismisses, devalues, insults, misinforms, lies to, lies about, steals from and poisons the public, why are you surprised when they walk away from you? Where is your responsibility in this?'
I asked them to do some self-evaluation. Demanded really.
I emailed the letter to Lori Kozlowski, posted it on my blog and Age of Autism (which Chris disparaged in his interview) also ran it. The overwhelming response from my community of autism parents, "us" if you will, can be sampled in the comments sections following the piece and can be roughly characterized as, "What Ginger said".
Some of those I wrote to responded, some did not.
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.
The picture I have had in my head as I have read the emails that have gone back and forth between these "science writers" and me is of a snake chomping down on its own tail. But not in the circle of life or ourosbors symbolism kinda way. More like what would actually happen if a snake in the real world decided to make a meal of himself. Suicide by ignorance. And oddly, responding to the woman shouting to them that they are eating themselves by eating themselves faster and with more zest.
Because what these individuals are doing is neither science nor journalism, and in the process they are destroying the professions of science and journalism.
And when I pointed this very phenomenon to one "science writer", David Gorski, MD, PhD, he still didn't get it. Or refused to get it. Or got it but still chose to dismiss me, insult me, avoid my questions, etc... etc...
Then yesterday I was contacted by Virginia Hughes, another young "science writer" who wanted to know if I would post her survey on my blog so that she could get the input of my community for a ethics report that she had been commissioned to do for Cold Spring Harbor Laboratory to inform the direction of their genetic autism research.
Well that really got to me.
Because the young Ms. Hughes had interviewed me two years ago at length for a piece she published in Nature Medicine , that... well... was not reflective of the actual content of the debate or information I offered her, portrayed parents and dangerous whack jobs and didn't exactly fully vet the information she was offered by those who claim that vaccines don't cause autism. She let her readers know that poor scientists like Paul Offit were in danger for their lives from conspiracy theorists parents like me who believe that vaccines are associated with autism that she reported were known as "The Mercurys". (A moniker she apparently made up because not even Mom's Against Mercury had ever heard that nick name before. It didn't sick.) And although she can't even write an objective article about autism causation and treatment research, she is being asked to contribute to the direction of autism causation and treatment research.
And because Ms. Hughes, who ' gushes about a hodgepodge of mostly scientific ideas on the ever-rockin' ScienceBlogs network ' and is apparently BFF's with "band chick" Sheril Kirshenbaum (for whom "scientist" is just "one of [her] many hats at the moment" and who wants to be an astronaut when she grow up) and Chris Mooney, who conveys all the subtly in his arguments (liberals good, conservatives bad, smart liberals smart, smart conservatives stupid) of... well... a 31 year old, unmarried guy with no children who is impressed with how clever he is.
And because these three very young, inexperienced and immature people are being published, and asked to serve on panels and invited to speak on life and death issues for children... for my children... by a science/journalism industry who seems to me to have lost its mind. Or is it that a corrupt industry can't find any grown ups to put forth these silly, biased, partisan arguments any more?
Smart does not equal wise, and foolish people in positions of influence are a recipe for disaster.
As I watch Chris Mooney claim to be a "journalist" and give a speech to the American Institute of Biological Sciences where in he shows a slide of Jenny McCarthy and Jim Carrey calling them "Dumb and Dumber", I want to scream, "Where are the grown ups who are supposed to be overseeing these people! Parents of children with regressive autism are insult worthy to this guy, and he is being put in front of a microphone to talk to scientists about his book about how mainstream America, where the autism rate is now 1 in 100, is rejecting the message of people like him?! Is this whole thing one big practical joke?"
So I have just decided to give up. By all means Mainstream Science Journalism Industrial Complex, go ahead and put tweeners who dismiss half of the country, and insult and ignore people who say things they deem unworthy right out in front as your standard bearers. Continue to ignore your critics, and cash your Pharma checks and enjoy giving awards to one another as you become less relevant to people's lives and your news outlets fail. I am going to just pass you the salt and watch you devour yourselves.
But what I am not willing to do is let people remain under the impression that you are earnest, unbiased, professionals, leaving no stone unturned in the pursuit of the truth and in service to the public, if I can do any little thing about it.
So I am going to share with my readers all of the emails that I have been exchanging with these "science writers" for the last three weeks so that they can see for themselves that said writers cannot or will not evaluate information that does not fit into their paradigms, that they cannot or will not do any self-evaluation to see if they are on the wrong path, they cannot or will not simply answer the questions of a random angry autism mom and that when they pose as objective and thoughtful scientists or journalists, they are a perpetrating a fraud.
The responses I have gotten have been varied. David Gorski says that I don't count, Sheril Kirshenbaum thinks whatever David Gorski thinks, Chris Mooney apparently doesn't think any thing at all as he has never responded. Lori Kozlowski thanks me for my interest and encourages me to up her profile and readership by posting my thoughts on the new thread that the LAT has set up for commenters, complete with medical industry ads. Rosie Mestel, Lori's editor, wants me to not be so hard on Lori, poor thing, and does not want to address the implication that she may have made a really bad call in assigning this material as she did.
Then there is Thomas H. Maugh II who thinks I am, "Wrong, wrong, wrong, wrong!"
For those of you who have read this far, and intend to read the whole thing, please take note of what you will not see in the responses that I got from these "science journalists" who are posing to be accurate, objective reporters on autism
You will not see the phrase, "that is a good point, let me think about that". No where will you read, "yes our community might have a blind spot there, we need to work on that". No one responded, "you are right, we have never even covered that part of the debate, can you point me toward your source on that?" Not even a, "well I can see why you are all worked up about this and you could be right there, but we are so overwhelmed we just don't have the resources to look into that right now".
Because those of you who still believe that what you read from these sources is well thought out, thoroughly investigated and crafted by earnest, wise, honest professionals working hard to overcome the biases and corruption that are inherent in any kind of writing, and understand the dead seriousness and life or death consequences of the words they will be putting down on paper, just might be wrong.
And that is important, because at issue is not your picks for fantasy football. At issue is the life and health of your child.
These writers combined reach hundreds of thousands of people. Millions even. On a good day I have about 500 visitors. All the power I have in the world to fight this are my words typed from my living room as I run back and forth from my computer to my mischievous and danger prone son with autism, but I am spending it all here. So for the few of you who will read this, please encourage those you love to think critically about the messages they are getting. To ask hard questions of those making medical and scientific pronouncements and when those pronouncements don't hold up to scrutiny, to vote with their feet and walk away.
Because morality, honor and wisdom in scientific journalism is dying. The corruption is drowning out the voices of the few in the industry that are speaking out against the nonsense, and the death continues because it is propped up by those who won't walk away from the individuals who are killing it. Editors and media owners have no motivation to check their writers as the bias of their writers are bring in Industry Dollars (even while their readership dwindles because they are not getting the hint). The only check in this system any more is the American Public.
In the last few years I have become interested in the anatomy of corruption. The actual process by which institutions (and individuals) destroy themselves or betray their own mandate. It can be likened to the process of death by cancer.
I read once that it is estimated that 90% of the public has "cancer" at any given time. Generally speaking "cancer" happens when a cell divides incorrectly, which happens a lot. Fortunately a healthy immune system will spot the errant cells and destroy them before they cause harm, so most people are not threatened by these errors.
But when the immune system ceases to recognize and address these errors, two malignant cells become four, which become eight which eventually kill the host.
The LA Times is dying. They filed for bankruptcy in December and have laid off people this year. And of course they are. When a reader writes passionately to them that they have handled a very important issue, very poorly, and they respond with dismissals, insults and see it as an opportunity to capitalize on controversy rather than doing their journalistic duty, it is ample proof that their immune system is dead and the cancer is running amok in the body.
As I publish this piece and the correspondence between these individuals and myself, it is in the full expectation that the reaction that I will get will be dismissals, insults... blah, blah, blah... ad infinitum... the snake continuing to eat itself. But in the event that anyone decides to take a look in the mirror, makes a move to end the cycle of self destruction and actually begins to try to answer my questions or take a hard look at themselves to how they are contributing to the demise of their own work and the alienation of the public, I will certainly call attention to it.
So public, decide for yourself. Are these the people that you want to be taking medical and scientific advice from on how to keep your children safe?
The initial article" Bringing science back into America's sphere " by Lori Kozlowski
My letter to Lori, Chris and Sheril
Lori, Chris and Sheril,
Responses from Lori Kozlowski, Rosie Mestel and Thomas Maugh from the Los Angeles times
Subject: RE: "Science"
Then Ms. Mestel sent the following email to LA Times Science Writer, Thomas Maugh"
From: Mestel, Rosie
So Mr. Maugh wrote back to me
Subject: FW: "Science"
My response to Mr. Maugh
Subject: Re: FW: "Science"
I did not receive a response to my request of Mr. Maugh
But then David Gorski (a senior cancer surgeon who is pushing 50 but still calls himself "Orac" as he holds out the very low standards of behavior for a physician to his readers and whom I have attempted to have a civil, productive discourse with for a few years despite his contempt for me and my point of view) responded to my letter to Lori, Chris and Sheril. His response can be found here
Note that he misses the entire point of my letter.
So I wrote to him, attempting one last time to have an earnest discourse with him
Subject: Your piece today
Unfortunately his response was as inhospitable as ever
Subject: Re: Your piece today
And that was apparently that was the end of the patience I have been able to extend to David Gorski
Subject: Re: Your piece today
As you might imagine, he was not willing to do any work with me on this, and our conversation ended thusly
Subject: Re: Your piece today
Subject: Re: Your piece today
And that will probably be the last time I ever hear from him.
Sheril Kirshenbaum's response can be found on her blog in a piece entitled, " Responding To Ginger Taylor: On Autism And Vaccination, Do Not Confuse Correlation With Causation " which is odd because first, she doesn't respond to me, she just says that she will let Orac respond for her (which I guess puts her name as a signatory on his blog post and makes her responsible for all his bad behavior and venom) and second characterizes my letter to her as making the arguement that correlation proves causation, which has nothing to do with what I wrote to her.
So I wrote to Ms. Kirshenbaum and asked the following
Subject: responding to your response
She responded with a short email saying that she and Chris were traveling, but I can't seem to find it.
So a few days later I wrote
Subject: my comment on your post
She never responded, but she is back blogging about Filet-O-Fish sandwiches so I assume she is back from wherever and just has decided not to respond.
And finally Virginia Hughes had the misfortune of contacting me and adding the cherry on top of my angry cake, by pretending to be the same earnest, perky, unbiased science girl as she did when she contacted me two years ago.
Subject: An urgent request
But unfortunately, nice, helpful Ginger that was once as young and carefree as Ginny is has gone the way of her son's eye contact and there was only this cynical old lady to answer her
Subject: Re: An urgent request
Her response in which she pities my readers for not being able to take part in her presentation
Subject: Re: An urgent request
Subject:Re: An urgent request
Subject: Re: An urgent request
Ginny's defense of her professional behavior
Subject:Re: An urgent requestMy response to Ginny, who clearly has no clue of the damage that she is doing from her ivory tower.
Subject: Re: An urgent request
And that is the last of it between "Ginny" and me.
If you are an earnest scientist or journalist or science journalist who is hold themselves and their colleagues to the ethics of your profession, earnestly evaluating all the observations that are being made and are humbly working in the service of the public and individuals (and I know and know of many of you) this post is not about you. As I have often encouraged you before, I will do so again now. Wise pediatricians, physicians, researchers, scientists and journalists, rise up and take back your professions.
If you are someone who has improved the health and functioning of children with autism, thank you, thank you, thank you.
And if you are a whistleblower, God bless you. May you get vindication and twenty million dollars.
But for those of you in the skeptic community or are disciples of "Orac" who want to roast me over this, fine. I got it, I am a stupid, ignorant, mean, hypocritical, lazy, evil, dangerous idiot... I am all these things and more. As a Calvinist, I can do nothing but fully agree with you. "The heart is deceitful above all things, and desperately wicked: who can know it?" I am sure that I will never be able to examine the depths of my own corruption.
And I am sorry that I am not a nice person any more. Once upon a time I was a lot of fun.
But concerning the matter that Chris Mooney raised, your opinion of me doesn't matter, because I am not trying to sell you anything. I am just a random mom with just enough education to be able to ask questions and see that you have few good answers.
But the public's opinion of you does matter, because you are trying to sell them something. Your view of science.
There is an old adage, "People don't care what you know, until they know that you care". It is abundantly clear from the last six years of my life that those who identify with Skeptic Brand Science, don't care about people like me or care what we think.
And that matters, because according to Chris Mooney, I am your target audience.
I was your target audience audience.