July 16, 2007

Full Disclosure in Correcting My Error In Writing About Other's Errors

Last week David Kirby posted this HuffPo piece. I posted it to my site.

A short time later, Mr. Kirby posted this to the EOH list, outing well known autism author, Roy Richard Grinker, Ph. D., as someone who was posting anonymously in the comments section.

RE: This comment on Huffpost:

“Unfortunately, Mr. Kirby continues to believe that California's DDS enrollment figures constitute epidemiological data. They do not. The author even makes a claim about statistical significance! He also introduces a new term into the discussion -- "full spectrum" -- (which he suggests is equivalent to Autistic Disorder) -- and states that the DDS counts only Autistic Disorder, not PDD-NOS, or Asperger's, or Down's Syndrome children with autism, or any other phenotype. This is absolutely wrong. Not even the best epidemiological studies are particularly good at distinguishing among the subtypes. It is truly disappointing to see the Huffington Post continue to publish phony epidemiology.”

Signed: Mfano

But “backstage” I see that his email is actually rgrink@gwu.edu

If Dr. Grinker would like to debate this subject out in the open, using his real name, I would be more than happy to take part. You would think that someone of his stature would have more pressing things to do with George Washington University’s time and bandwidth than send anonymous, erroneous comments to national political blogs.


I also posted this to my site.

A list member on the Evidence of Harm list noted that Dr. Grinker has a habit of posting anonymously to talk about his own work.

Update: From "celiacdaughter" on the EOH list:
...If you search some of his (Mfano) previous posts you will also note that he enjoys using the third person when discussing himself:

"So Foresam, tell us: how Grinker should look for autistic adults? The woman Grinker and Chew wrote about in the blog wasn't on record anywhere as autistic. Grinker doesn't say, but she probably bit herself and smeared feces too. No one missed her. She was called mentally retarded and given lots of treatment and care. She just wasn't called autistic"...


I also posted this to my site.

Then a little while later, Mr. Kirby announced that he had inadvertently broken the HuffPo privacy policy in making the information public and apologized for the breach.

Dear List members

I have been informed by the editors of the Huffington Post that it is against the rules to reveal the identity of people who post comments on the blog.

I was not aware of that rule.

I apologize to Huffpost and, particularly, to Dr. Grinker, for the violation. Please do not attempt to contact him directly. He made his comment in the full belief that his identity would not be revealed, and we all need to respect that decision.

Again, my apologies to everyone.

David


I did not see the post.

Kristina Chew Ph. D. wrote to me and asked that I remove the information on Dr. Grinker. Dr. Chew is a co-author of Dr. Grinker.

I checked the EOH list and found Mr. Kirby’s apology. And sent her this reply.

Hi Kristina,

I just read all this and am genuinely unsure of what to do here.

Let me think about this.

Ginger


As I was thinking about the ethics involved, an email arrived from Mr. Kirby arrived asking me to remove the information in deference to Dr. Grinker.

I then decided to remove the information in an attempt to “keep the peace”.

Dr. Chew noted that I had forgotten to remove Dr. Grinker's name from the labels, so I did.

I also removed four comments from the post that referred to the deleted information as they only served to pique one's interest in the deleted information.

kristina has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

In your "update," you quote David Kirby's message on the EoH Yahoogroups List in which he revealed Roy Richard Grinker's identity, as well as some additional messages from the EoH Yahoogroups List on this matter. Mr. Kirby's revelation of Prof. Grinker's identity was a violation of the policy of the Huffington Post. It is therefore inappropriate for the EoH messages to still appear on your blog.

Thank you very much.
Kristina Chew
Auitm

Sincerely,
Kristina Chew
http://www.autismvox.com


kristina has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Thanks very much, Ginger. As you've removed the update, perhaps it might also be possible to remove the tag for Roy Grinker? Best wishes from Kristina Chew

autismvox.com

Posted by kristina to Adventures in Autism at 7:07 PM


Camille has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Any comment on the way David Kirby outed the commenter he didn't agree with to the EoHarm yahoo! group?

Do you think it's OK that he outed an anonymous commenter? I guess you did because you posted the details of the outing here, approvingly.

Do you think Kirby ought to apologize to Grinker in public? Do you think Arianna needs to apologize for bamboozling her commenters into thinking they were anonymous to the bloggers?

Posted by Camille to Adventures in Autism at 12:17 AM


Ginger has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Well Camille, commenting on all that would kinda defeat the point of taking it down, now wouldn't it?

Posted by Ginger to Adventures in Autism at 9:11 AM


After reading discussion of the incident today, I realized that I had fallen into the same trap that I accuse main stream media of doing, making editorial decisions based on politics. I have replaced all the information so everything is back on the record.

I should not have taken the information down.

I apologize for doing it.

Today I reposted the information and sent the following email to Kristina Chew, Roy Grinker and David Kirby:

At the request of Dr. Chew and Mr. Kirby (who related Dr. Grinker's wish), the information on Dr. Grinker's anonymous posting on HuffPo was removed from my site. I was very reluctant to do it, but did so to keep the peace and try to honor the requests of those involved.

After seeing the fall out from my decision, it is apparent to me that my choice was a poor one and I have corrected it by reposting the information. I will be following it up with a discussion of the matter in a separate post. All of this information is relevant to the autism debate, Dr. Grinker's deception, Mr. Kirby's breaking of HuffPo rules (unknowingly or not), Mr. Kirby's public apology, Dr. Grinker's lack of any kind of mea culpa (as far as I know), Mr. Kirby's and Dr. Chew's request to have the information taken down, and my poor choice to self-censor after the fact.

One of my central complaints in the autism debate is the strangle hold on information that prevents the public from making informed choices on who to trust and what advice to take. When I removed the information I violated my own policy and took part in something that I have been criticizing for three years.

If any of us are to be of help to those with autism and their families, openness, transparency and integrity are essential. To be as frank as I can be, everyone needs to stop worrying about their bull shit reputations and do the right thing. If you make a mistake, then apologize and clean up your mess as best you can and face the consequences.

Any of us with letters after our name or books on autism don't have the maturity to do that, then we should not be a part of this discussion. Too many people's lives depend on its outcome.

Sincerely,
Ginger Taylor, M.S.


I try to run an honest blog, I have tried to be as open and transparent as I have challenged others to be. I will work harder to maintain that standard in the future.

I am sorry for the lapse in judgment.

14 comments:

kristina said...

Ginger, I've appreciated corresponding with your on these matters.

Sincerely,
Kristina Chew
autismvox.com

Interverbal said...

I think it is spelled "mea culpa".

Hmmm....

I don't really agree with your decision here, although of course it is your decision to make.

Thanks to your re-posting we now know that Mr. Kirby made an honest mistake and one that was already corrected by both the Huffington Post and EoHarm.

We also know that Dr. Grinker sometimes posts messages as an anonymous commenter just like almost every other commenter at Huffington Post.

I see no real lessons to walk away with from such disclosure. Perhaps you do.

Ginger said...

Thanks for the spelling correction. I can barely spell in inglish much less laten.

I understand the non disagreement and I have no problems with any one criticizing me for my decision. For me it is a matter of which principle to stick to and I decided on the one that was most consistent with what I preached most often.

Lessons? Everyone should just quit playing stupid games already and deal with the problems at hand.

Sorry I have not gotten back to you on the actually legitimate comment you made on that post. I have been to distracted by this stuff.

Camille said...

So I guess we'll all wait for Arianna to discuss the fact that Kirby should not have had access to his commenter's email addresses and whatever information that bloggers there can see "backstage".

I guess we have to wait for a public apology from Kirby because he hasn't made one.

I think Huffpoof needs to kick Kirby out, but I guess they like him, even though he broke their rule(s).

So now we'll never know who knows what about which commenters there. I wonder if Arthur Allen knows who "maximom229" is, for instance... I'm guessing that he wouldn't be looking at the email addresses of the commenters, though, and I'd think he'd have too much integrity to share such information.

Grace said...

All this schoolyard baloney is pathetic. Roy Grinker who? If this had happened with one of "the other side's" guys they would be defending him or her and playing it down while "this side's" people would all be going on about the shock & scandal. (Like who at this point really believes they can use the internet with anonymity anyway?) It's like watching the Democrats & Republicans in politics. No wonder we can't find any answers - seems like everyone's so busy inspecting each other's undergarments that they aren't paying enough attention to things that really matter - things that matter to us all and, even more importantly, to our progeny. Bleh.

Ginger said...

well if "maximom229" turns out to be Jill James... do keep me posted.

Kev said...

There are two issues that I think are a bit odd in all this.

1) David Kirby broke the terms and conditions of a websites privacy policy. This would be akin to an employee blabbing to all and sundry about the details of their clients. Its not a 'nothing' act. It goes right to the heart of the ability to practice free speech on the internet without the threat of intimidation. Professor Grinker is one (but far from the only one) of late who has had physical threats made against him by members of the Yahoo group where David Kirby elected to do his 'outing'. Its hardly surprising he wanted to remain anonymous, given the behaviour of the members of Kirby and Schafer EoH yahoo group.

2) Kirby has not made a public apology. He posted an apology (of sorts - apparently we're to believe he didn't know HuffPo had a privacy policy) to the private access EoH Yahoo group.

If he was any sort of man, he would post his public apology publicly. I for one would like to see it (minus the whining about 'not knowing about the privacy policy') on his Huffington Post blog. You know - in public. I doubt he'll have the courage to do that however.

Ginger said...

David Kirby apologized to Dr. Grinker privately and posted an apology on the EOH list where the offense was made.

I believe that is completely appropriate and unless Grinker has asked for a public apology, any apology more public would only serve to bring more attention to Grinker's childish behavior, further damaging his reputation.

My understanding from Mr. Kirby's request of me to take the information off my site was that Grinker wanted this entire episode erased from the web.

At this point, you guys are the only ones talking about this any more, bring more attention to the fact that Grinker, a Harvard Ph. D., behaves on the internet like a tweener in a chat room.

And Kevin, you are about the last person that should be chastising anyone for mistreating people online. The escalating abuse that you heap on people has crossed way over the line in my book. You have lost all credibility with me and while I am certainly not going to delete your (non-abusive) posts if you comment here, I am not thrilled about you participating on the discussion on my blog.

You have a platform for voicing your opinions, and I want to encourage to do it there and not here.

Kev said...

"David Kirby apologized to Dr. Grinker privately and posted an apology on the EOH list where the offense was made.

I believe that is completely appropriate and unless Grinker has asked for a public apology, any apology more public would only serve to bring more attention to Grinker's childish behavior, further damaging his reputation."


I'm sure Professor Grinker is mortified that you think ill of him Ginger. However, what I am pointing out to you is that fact that Kirby claimed his apology on EoH was public when, by the very definition of a closed access group, it cannot be. However, more weasel words from David Kirby at this juncture are hardly a surprise.

"At this point, you guys are the only ones talking about this any more, bring more attention to the fact that Grinker, a Harvard Ph. D., behaves on the internet like a tweener in a chat room."

Forgive me Ginger but didn't you write this post? You can't be surprised when people point out the inaccuracies behind it.

"And Kevin, you are about the last person that should be chastising anyone for mistreating people online. The escalating abuse that you heap on people has crossed way over the line in my book. You have lost all credibility with me and while I am certainly not going to delete your (non-abusive) posts if you comment here, I am not thrilled about you participating on the discussion on my blog."

I'll get over I'm sure.

The point that you are refusing to see is that Professor Grinker and at least three other people I can think of - all scientists conducting impartial research - have had been slandered and defamed by various groups you carry links to. They have also had threats of physical violence made against them on the EoH list and in other places including their home and work telephone accounts. This goes a bit beyond falling out with someone online. I find it incredible that you would be surprised that any of these people might want to:

a) carry on participating in the debate and;
b) want to do it anonymously due to the threats made against them.

You accuse me of 'escalating abuse' and yet deem it entirely acceptable to implicitly forgive the violent intent of others solely because they agree with your basic position on vaccines and autism.

As a group, you need to take a long, hard look at your behaviours. As an individual - as, I understand, a christian individual, I think you need to take a long, hard look at what you are fighting hard to find excuses for. And whilst you're doing that, go have a look at all my online behaviour and see where you can find any reference to threatening anyone with violence.

Bright Chapper said...
This comment has been removed by a blog administrator.
Ginger said...

Kevin,

I don't condone threats of physical violence.

Nor do I take responsibility for anyone else's threats of physical violence.

The EOH list has something like 17,000 people on it, including members of the neurodiversity movement and various government agencies. Surely you cannot be suggesting that being a member of that list makes one responsible for everything that it said on it, or binds one to comment on everything that is said on it?

EOH is a massive list and I only read a fraction of it and usually skip past heated discussions looking for the harder stories.

What I have been writing about here has nothing to do with threats of physical violence. I have not heard the idea that people involved in research had threats of physical violence made against them.

You have made a leap that I am way behind on.

But just so you be sure of where I stand:

I am publicly stating for the record that no one int he autism debate should make threats of physical violence against another person for any reason.

Do you need anything else from me on this topic Kevin?

"You can't be surprised when people point out the inaccuracies behind it."

Did I miss something? I don't see where you have pointed out any inaccuracies. Has Kirby claimed to have apologized "publicly"?

Repeating... I said that I thought it was appropriate for him to apologize in the place that the offense was made, on the EOH list.

Again... has Grinker asked for further and more public apologies?

Again, my communication with Mr. Kirby suggested to me that he was doing everything that Grinker had asked him to do, including asking me to remove my posts on the matter. You seem very hung up on having an apology in a more public place... I can't say for sure, but I don't think Grinker wants one in a more public place as it would only call further attention to the matter.

Before you guys push for a more public apology, check with Grinker or Chew and find out if he wants one.

If he wants one, I will invite Mr. Kirby to make a more public apology here on my humble blog.

I would be surprised if Grinker did not strongly discourage one.

"all scientists conducting impartial research - have had been slandered and defamed by various groups you carry links to"

Slandering and defaming means knowingly printing wrong information about a public figure with the express intent of doing harm to them. If you feel that I have done that some where, you are more than welcomed to bring that to my attention.

I make a practice of noting information that is in dispute from credible parties.

As I don't consider you a credible party any more, I probably won't be printing anything that you send me, unless I can confirm it somewhere else.

But again... I answer for me and me only.

Ginger said...

Bright Chapper,

I have have a pretty liberal comments policy, basically it is this:

No 'you suck' commenting.

Comments that are nothing but insults to me or any one else, regardless of who the commenter or the target is, get deleted.

I have read yours through several times trying to find a question I can answer or a legitimate discussion to be had, but yours just seems to be a lengthy 'you suck' post, so I am going to go ahead and delete it.

If you have something that can actually be discussed in earnest, feel free to leave another comment.

Kev said...

"The EOH list has something like 17,000 people on it, including members of the neurodiversity movement and various government agencies. Surely you cannot be suggesting that being a member of that list makes one responsible for everything that it said on it, or binds one to comment on everything that is said on it?"

No, I am not. I never made that claim. What I am suggesting to you, for the third time, is that it should be entirely obvious to anyone why Professor Grinker wanted to be anonymous. Far from 'behaving like a tweener' as you describe it, it is undoubtably born out of a wish to not be exposed to more threatening behaviour from non-neurodiversity, non-governmental members of the EoH list.

"What I have been writing about here has nothing to do with threats of physical violence. I have not heard the idea that people involved in research had threats of physical violence made against them."

Then you need to wise up to the actions of your fellow list members and realise the reason why professor Grinker - whom you have seen fit to call names here - might want to be anonymous around people like David Kirby and his (your) list mates. Here's what happened to Paul Shattuck:

"After Mr. Shattuck's paper last year, he received "a half-dozen phone messages on my answering machine that were either vaguely or specifically physically threatening," he said.

One person said, "Don't be surprised if you get a knock on your door in the middle of the night and I'll be there." Another message said it was easy in the age of the Internet to find out where people live.

"Nothing ever came of it, but it was nerve-racking," he says. "I have a family and a young child." "


"Do you need anything else from me on this topic Kevin?"

Yes. I need an acceptance from you of the fact that a lot of people elect to be anonymous around you and people like you these days because of actions such as detailed above.

""Did I miss something? I don't see where you have pointed out any inaccuracies. Has Kirby claimed to have apologized "publicly"?"

Yes he has. You would have to ask him to provide that particular piece of correspondence however. I am not in a position to reveal it.


"You seem very hung up on having an apology in a more public place... I can't say for sure, but I don't think Grinker wants one in a more public place as it would only call further attention to the matter."

I'm hung up on - just for once - Kirby having the courage to do what he says he will.

"Before you guys push for a more public apology, check with Grinker or Chew and find out if he wants one."

Why would you assume I haven't?

"Slandering and defaming means knowingly printing wrong information about a public figure with the express intent of doing harm to them. If you feel that I have done that some where, you are more than welcomed to bring that to my attention."

I didn't say you had Ginger, I said groups you carry links to. Referring again to Paul Shattock, the NAA released this in a press release:

"Additionally, Pediatrics failed to disclose a potential or actual conflict of interest. Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC)."

However, as noted by several bloggers (I'll link to them, not me in order not to displease you), they lied:

"Oooh, Shattuck received money from the evil Merck to support his training! Except that the Merck we're talking about seems to be not the evil drug company but rather a nonprofit organization, the John Merck Fund, which supports research into a variety of areas, particularly developmental disabilities."

Orac

Please read that post for more on how the NAA lied including comments from Shattock himself.

"I make a practice of noting information that is in dispute from credible parties."

It wasn't 'in dispute' it was flat out wrong and designed solely to mislead. The NAA have issued no apology for this slur. And please don't suggest they don't know about it. They do. Myself and Lenny Schafer swapped emails about it and he promised to make them aware of it.

"As I don't consider you a credible party any more, I probably won't be printing anything that you send me, unless I can confirm it somewhere else."

These things are all in the public record Ginger. That you didn't know about them is your loss and your readers loss who might have some reason to expect you to know what you're talking about.

Ginger said...

What I am suggesting to you, for the third time, is that it should be entirely obvious to anyone why Professor Grinker wanted to be anonymous. Far from 'behaving like a tweener' as you describe it, it is undoubtably born out of a wish to not be exposed to more threatening.

Well then you have suggested it and people can make up their own minds about it.

"After Mr. Shattuck's paper last year, he received "a half-dozen phone messages on my answering machine that were either vaguely or specifically physically threatening," he said.

Had not heard about this, and yes this is wrong… and the police should handle it.

I am also pro life, but I am not going to answer for any threats made to abortion docs.

I need an acceptance from you of the fact that a lot of people elect to be anonymous around you and people like you these days because of actions such as detailed above.

This idea is not for me to accept or reject. People can say what their motives are for doing things, they can even do that anonymously. If that was Mr. Grinker’s motive he can share that if he likes.

And “you and people like you?” Kevin I am not going to play the guilty by association game. AGAIN, if I have done something wrong, confront me on it and I will deal with it as best I can. Being a member of a list does not make me responsible for its contents. You are a member of that list as well.

Yes he has. You would have to ask him to provide that particular piece of correspondence however. I am not in a position to reveal it.

This is just silly Kevin. Again, Grinker is a Harvard Ph. D. He can fight his own fights. If he wants something, he can ask for it. If he has a problem with Kirby, he can say it out loud. Kirby is a grown man and can deal with the problem himself.

I'm hung up on - just for once - Kirby having the courage to do what he says he will.

Well then go bother Kirby to issue a public apology. I am not Kirby, nor his apologist. But TO MY KNOWLEDGE, Grinker has not asked for one. Your secret back ground information that you cannot disclose just seems to me more high school mentality.

Re: NAA on Shattuck and Merck v. Merck Fund, I will look into that and note it on the post.


And a personal plea from me.

Please Kevin, and I mean this with all sincerity, enough with the mean already.

It is impossible to carry on a conversation with you with out having to put up with sarcastic comment, after offense, after insult.

You never pass up an opportunity to be hurtful, and it takes a great deal of emotional work to sort through all of the insults your hurl to deal with you on the meat of any issue.

Our conversations go back years, and I have always been respectful of you. I am now at the point that I really want to start insulting you back and I really don’t like being in that place.

You have become a mean, vicious person and I don’t like dealing with you anymore. You don’t seem able to carry on a conversation with me with out trying to tear me down any more.

I have really had enough of it.

So why don’t we just state for the record that you believe that anything that I believe is foolishness, and that no one should listen to me and stop wasting our time with these conversations.