Generation Rescue and Change.Gov

2 Jan

Sometimes you put off a project and it goes stale.  The moment has passed, the project never gets done.  Then again, sometimes you put off a project and it gets more interesting

Such is the case of a comment I saw on Change.Gov. I saw it and thought I’d include it in a future blog post I am considering (let’s see if I write it before it goes stale!). But, instead of missing the window to blog it, enough has happened that it is even more interesting.

Change.Gov
is the Obama transition team’s website. In the spirit of open government, they are allowing people to submit questions for review. Other citizens (not only US, by the way) can vote on how important a topic is and, one assumes, the subjects with a lot of votes will get noticed by the transition team.

Given that, I was not surprised to find a question submitted by Generation Rescue’s Kelli Ann Davis. The question is copied below:

“Jenny McCarthy and Jim Carrey were named 2008 Couple of the Year (www.ageofautism.com) due to their advocacy work for Generation Rescue. Why hasn’t the Transistion Team made autism a top priority and sat down with the leaders of this organization?”
Kelli Ann Davis, Reno, Nevada

Since I first saw this, Orac has blogged about it. Not only did he blog it, but he did a very uncharacteristic move: he called for a poll mob ala P.Z. Myers. Yep, Orac got people to log in to Change.Gov and vote on Ms. Davis’ question. Given that one has to actually register before voting, the effect is impressive. At this point, 200 people are voting against Ms. Davis’ comment vs. 137 pro. I don’t recall the numbers from when I first saw it, but I do know that the votes were more “pro” than “con” when I first saw it.

This has not gone unnoticed by the good people at Generation Rescue. Kim Stagliano recycled not only the Age of Autism’s methods (name calling) but recycled an old post by Mark Blaxill as well. Frankly, I am amused. I found the original post by Mr. Blaxill amusing (not in the way he intended, I am sure), and I find it amusing still.

But, that is not enough to really blog about, at least in my book. Rather, I think it is worth taking the time to put in public why I opposed Ms. Davis’ comment.

Go back and read it again. The first thing that strikes this reader is the disingenuous nature of the comment. Jenny McCarthy and Jim Carrey were named couple of the year by the Age of Autism? Huh? I guess if they figure that the Obama (or, as Ms. Davis spelled it for some time, “O’Bama”) team doesn’t know the history of their blog, that might work. However, for those of us who know the Age of Autism as a rebranded “Rescue Post”–the blog of Generation Rescue–it is an odd move, to say the least:

Generation Rescue, which they call “Jenny McCarthy’s Autism Organization” voted Jenny McCarthy and her boyfriend “Couple of the Year”. Were I, a blogger on LeftBrain/RightBrain, to name Kev “LeftBrain/RightBrain’s pick of autism leader of 2008”, would you be impressed? See what I mean?

But, the disingenuous nature of Ms. Davis’ question is just the symptom, not the real problem. Actually, I see two big problems with Ms. Davis’ proposal. (1) It has all the appearance of self promotion, both for Generation Rescue and for Jenny McCarthy and Jim Carrey. And, (2) No surprise, I am sure, but I find Generation Rescue’s “Couple of the Year” to be highly inappropriate representatives of the “autism community”.

Let’s look a bit closer at these concerns, shall we?

First, keep in mind that Generation Rescue is an organization led by business people and PR people. Even without that, it’s pretty clear that they want to break out into being accepted as a mainstream autism organization. What better way than to say that they are advising the administration on autism issues? As to Jenny McCarthy, is there anyone who doubts that she has been rebranding herself as an autism “activist”?

Still wondering about the self promotion angle? Imagine the talk show circuit next year (and as many years into the future as Jenny McCarthy autism books sell):

“Oh, yes, Oprah, as I was just saying to Barack….”

In addition to Jenny McCarthy potentially cashing in on any meeting, how long before Generation Rescue would be touting themselves as advisers to the administration?

We are talking about the people who grossly inflated the number of people who attended the Green Our Vaccine Rally for effect. I’ve heard estimates of 500 to 1,500 attendees from people who were actually there. GR claims 8,000. If they would do that, they would play a meeting with the Obama team to the hilt.

Keep in mind, these are the people who publish blog posts claiming that HHS Secretary Leavitt stated in public that of course the government knows vaccines cause autism. To back that up, they claimed that someone overheard a conversation outside a church (if I recall correctly). If it were journalism rather than cheap blogging, that would be in the running for irresponsible story of the year. But, instead, it is just an example of the extreme lengths Generation Rescue and their team are willing to go to in order to keep their story alive. What would happen if they were able to talk about closed door meetings with people close to the Obama administration?

Moving on to my second concern: are Jenny McCarthy and Jim Carrey really appropriate as advisers to the transition team? Leave out the obvious questions of the whether people who propagate bad science and, in so doing, are endangering public health. I don’t have the space here to go into what has already been covered so well by Kev on this blog (and many, many others on other blogs, e.g. AutismVox or I Speak of Dreams ). Let’s just say I’d rather have Mr. Obama listening to the sources Mr. Bush used to formulate the decision to go to war with Iraq than listening to Jenny McCarthy on autism.

For example, remember how Jenny McCarthy’s story about her encounter with Barbara Walters changed dramatically between her book version and her interview version? Can we really have someone talking to advisers to the President of the United States and then “remembering” the exchange in whatever way puts her in the best light?

Consider that hypothetical Oprah show quote I had above. Flesh it out:

“Oh, yes, Oprah, as I was just saying to Barack, vaccines caused an epidemic of autism. I could tell he was listening and understood all too well, but I think that even he is afraid to admit the truth in public”.

As to Jim Carrey…well, remember his major stumble at the Green Our Vaccines rally? When asked what vaccines could be left out of the schedule, he said “tetanus”. Seriously, he had just spoken at a rally, but he hadn’t even done the homework as to what his own side thought. Sorry, he isn’t an expert who should be advising the administration, he is still at the level where Generation Rescue people should be being coaching him on what to say. Somehow I am flashing on the stories that have been leaked about coaching sessions with Sara Palin (Africa is a continent?). No, no, no. This is not a man I would want representing me even if I did subscribe to the Generation Rescue story. He just doesn’t have the depth of knowledge to meet the task.

To conclude, let’s answer one of the questions implicitly raised by Kim Stagliano’s blog post–why are people voting against Ms. Davis’ question? My answer: people aren’t voting against Ms. Davis’ question because it’s Kelli Ann Davis. They aren’t voting against it because it is promoting Generation Rescue or Jenny McCarthy (even though those are valid reasons). They aren’t voting against it because Orac told them too. They are voting against it because what Ms. Davis is proposing is a bad idea.

At least, that was my reason.

[Note: I made minor changes in this post shortly after publishing it]

21 Responses to “Generation Rescue and Change.Gov”

  1. Kelli Ann Davis January 2, 2009 at 06:02 #

    Sullivan:

    Just one simple question: Do you *seriously* think that 200 “no” votes on a site with over 3,364,922 votes cast is going to be a *deal breaker* on whether the Transition Team meets with Generation Rescue??

    Get real.

    “It has all the appearance of self promotion, both for Generation Rescue and for Jenny McCarthy and Jim Carrey.”

    No duh. Of course I’m promoting Generation Rescue’s message — what did you expect — for me to promote *your* message??

    And seriously, I had to laugh on the comparison of Kev to Jenny and Jim.

    Again, get real.

    Bottom Line: Whether you like it or not (and approximately 200 of your best buddies don’t) Jim and Jenny can open doors. And when those doors are opened, we are going to promote GR’s message. Pretty simple.

  2. David N. Andrews M. Ed. (Distinction) January 2, 2009 at 11:34 #

    even if your message is full of shite, Kelli?

    but of course… because you can be arsed to get a clue, can you?

  3. Kev January 2, 2009 at 13:41 #

    Kelli Ann – I think you’re overreaching just a tad. ‘Jim n Jenny’ can definitely open doors but maybe you haven’t noticed the determined direction of evidence based science Obama has moved to? I mean, you guys seriously thought he was going to appoint Kennedy to head up the EPA! LOL…

    You might get to see and he might even listen. But its clear that he understands that the answers to scientific questions lie in the science – not with ‘Jim n Jenny’.

  4. CS January 2, 2009 at 13:43 #

    Kelli,

    Can you and your fellow GR’s talk about other issues that are of more importance to autistics like segregation in the school systems, restraints, seclusion, lack of services and opportunities for adults on the spectrum, lack of adequate living options, poor civil protections, and the few job opportunities for autistics? This perserveration could be used to greater and long lasting good for autistics than to use precious national media opportunities to talk about vaccines. Most Americans are probably clueless to the issues I outlined above.

  5. Ringside Seat January 2, 2009 at 13:56 #

    No doubt the transition has sufficient experience to know that America is full of cranks.

  6. Joseph January 2, 2009 at 14:13 #

    Yes, it’s kind of a nonsense question if you think about it.

    Why should it matter if Jim Carrey and Jenny McCarthy raise an issue, more than it should matter if anyone else does?

    OK, so Generation Rescue thinks Jenny and Jim are great. Because of this the government should sit down to talk to Generation Rescue? As a top priority no less? Why in the world would this be logical at all?

  7. jypsy January 2, 2009 at 15:33 #

    “”The blog site, scienceblog.com, has requested that their members “crash” comments relating to a autism and links to vaccines, review of the CDC vaccine schedule , bio-medical treatment, and unbiased safety studies. Will you exclude these “no” votes?””
    Garry C., Spring Hill, FL
    (currently running 3-2 for)

  8. kristina January 2, 2009 at 15:58 #

    Just wanted to second what CS said.

    And is it possible that there’s some delusions (of counting numbers at rallies…..) and of the impact that “J n J” can make?

  9. Sullivan January 2, 2009 at 16:47 #

    Ms. Davis,

    thank you for taking the time to respond.

    You appear to be missing a major point of my post. You are not only promoting Generation Rescue’s message, but you are also attempting to promote Jenny McCarthy and Generation as an organization. There is a big difference.

    I admit that I am missing your point about a mere 200 votes against your question. Did you really think that posting your question would be the deal maker? Also note that I never stated or implied that this would be a “deal breaker”.

    Neither did I expect you to promote my message. I will point out that it is much easier to fight the straw men you have built than to respond substantively to what I wrote. At least you haven’t stooped to the silly name calling that Ms. Stagliano and Mr Blaxill rely upon. For that, I thank you.

  10. Socrates January 2, 2009 at 18:13 #

    Kelli Ann Davis,

    Around 80% of the autism spectrum can be helped to ‘overcome’ there autism simply by providing the basics of social and health care.

    Imagine that, an 80% reduction in the autism epidemic, in less than a generation.

    You are happy to lump us High Functioning Autistics, in to your statistics and scream ‘epidemic’ but you don’t advocate for us or our needs.

    We are not autistic because of vaccines.

    We are autistic through our genes.

  11. Kelli Ann Davis January 2, 2009 at 19:33 #

    Sullivan:

    First and most important, I will *NEVER* ridicule or berate a parent of a child with autism on a public forum simply because they have a different viewpoint than mine — EVER.

    Second, here’s the response I just posted on Orac’s site in response to his *deal maker* comment below:

    “2. If my “200 no votes” cast on a site with over 3,364,922 votes cast isn’t going to be a *deal breaker* what makes you think your 143 “yes” votes are going to be a deal maker as to whether the Obama Transition Team meets with Generation Rescue?”

    You’re making a huge assumption — I NEVER expected *this* process to be a deal maker — ever. That’s why I’ve said we will continue to move forward regardless of how many “crash votes” are cast. That’s the point.

    Go back and reread my post. The Transition Team has *already* made contact with us.

    The “polling process” is primarily for citizens to voice their concerns and ask the questions that are important to them. Pretty simple.

    Bottom Line: Whether you like it or not, Generation Rescue IS not going away and we will continue to drive home our message of hope, recovery and prevention every chance we get and your attempt to *crash* a poll IS childish and pointless and will NOT effect our forward progress.

    CS, Kristina: Agreed. There are a myriad of issues related to autism and if you read the document GR submitted to the Transition team we specifically mention the school issues. Also, the insurance issue is being addressed on another front.

    Socrates: You need to understand that I advocate on behalf of *my son* first and foremost and I believe he was injured by his vaccines.

    You obviously believe it’s solely genetic and so therefore, I would *never* be a representive of your viewpoint — and I don’t claim to be.

  12. Socrates January 2, 2009 at 19:43 #

    Kelli Ann Davis,

    I would expect nothing more from you than that you would advocate, in good faith, for your child.

    This much is unimpeachable.

    But your organisation mustn’t use my place in the autism prevalence figures to prosecute your case.

    I am not a diseased victim of an vaccine induced epidemic.

  13. Kev January 2, 2009 at 21:13 #

    So the transition team have contacted you already Kelli? Impressive. What exactly did they say to you? I suspect they’ve got the world contacting them right now so – beyond a form letter – what did they say?

  14. Anne January 3, 2009 at 03:02 #

    Kev, I think Kelli Ann explained the contact from the Obama transition team in her AoA post: she got an email encouraging her to submit and vote on questions at Change.gov. Hence her post on AoA asking people to vote on her question about why the transition team has not yet met with Jim and Jenny.

    At the present time, 154 people think Kelli Ann’s question is a good one. Compare that with the 9,808 people who think the question about universal, affordable health care is a good one, or the 15,956 people who like the question about banks’ accountability for bail-out funds.

    Maybe the transition team should schedule a session with Kim, Mark and Denis Leary. They could put on a skit mocking autistic people as Trekkies who pointlessly line things up and communicate through the wackosphere. Funnier than Jim Carrey! I mean, if you can’t make fun of disabled people, who can you make fun of? Especially when they’re your own kids.

  15. CS January 3, 2009 at 04:00 #

    “Kev, I think Kelli Ann explained the contact from the Obama transition team in her AoA post”

    I got the same email. Wow, she sure made it sound though like she was singled out. That’s funny.

    I read GR’s document. Kelli wrote “we specifically mention the school issues.”

    Kelli, my point was about restraint, seclusion, independence, civil protections, opportunity and inclusion. Your document didn’t address any of those concerns and in fact endorsed educational methods that are at the root and cause of restraint and seclusion.

    This is so sad that an organization with so much resources is devoted to so much waste. Those dollars could really help, but I’m afraid they are being spent to pursue personal grief issues.

  16. Anne January 3, 2009 at 04:46 #

    By the way, Ari Ne’eman of the Autistic Self-Advocacy Network reports that ASAN has already met with members of Obama’s transition team. I haven’t seen a report on what was discussed, but if ASAN’s letter to Virginia’s Joint Legislative Audit and Review Commission is representative of the issues being presented, I’m sure they did an excellent job.

  17. Anne January 3, 2009 at 06:19 #

    I just posted my own question on change.gov:

    “What will the Obama administration do to ensure that autistic people, as the primary stakeholders, will be able to participate meaningfully in policymaking on autism issues?”

    Search for “autism policymaking” to bring it up.

  18. Roger January 3, 2009 at 17:17 #

    There are reams of comments from parents,and others who say that so called “recovered” autistic children have only experienced mild.or temporary recovery.Parents have spent themselves into bankrupcy,for expensive protocols ,sold by quacks,like DAN! “doctors”,who have gotten wealthy off of these gullible parents.

    Generation Rescue.like all those who are convinced vaccines cause autism,are not going to go away.They are committed to this belief,and no amount of facts or studies are going to change their minds.They will always trot out the same old tired excuse of studies being funded by vaccine makers,or come up with fantastic theories,like vaccines altering DNA.I thought it was those of us on the spectrum,that were supposed to be rigid,and against change. If the Obama transition team is ignoring them,this is a strategy the rest of us should emulate.If they are going to act like children,who stick their fingers in their ears,and scream “La la la not listening.”,when they hear something they do not agree with,we should do like our mothers said,when other kids were teasing us,and ignore them.Somebody needs to be the grownups here,and it certainly isn’t going to be the Generation Rescues of this world.

  19. Sullivan January 3, 2009 at 22:08 #

    First and most important, I will NEVER ridicule or berate a parent of a child with autism on a public forum simply because they have a different viewpoint than mine—EVER.

    And I recognize this, and I recognize that this is not a position held by all at GR.

    You’re making a huge assumption—I NEVER expected this process to be a deal maker—ever. That’s why I’ve said we will continue to move forward regardless of how many “crash votes” are cast. That’s the point.

    I’m not sure if this is directed towards me. I would point out that I never made that assumption. I would imagine that you are pursuing other avenues as well.

    One should admit to one’s-self that even without the crash-votes, the response was low enough that it was unlikely to gather notice.

    Go back and reread my post. The Transition Team has already made contact with us.

    As a few comments have asked–what was the nature of the contact? Was it the same email many of us received asking us to participate in change.gov?

    Bottom Line: Whether you like it or not, Generation Rescue IS not going away and we will continue to drive home our message of hope, recovery and prevention every chance we get and your attempt to crash a poll IS childish and pointless and will NOT effect our forward progress.

    The poll mob will also not hinder Generation Rescue’s reverse progress, either.

    There is a childish nature to the poll mob, I’ll grant that. However, Orac was tapping into a very real negative reaction that Generation Rescue has engendered. If you wish to ignore that, you do so at your organizations peril. Believe me, people who monitor the reaction to GR from the general public, autistics and autism families will not be making the same assumption.

  20. Sullivan January 3, 2009 at 22:34 #

    And seriously, I had to laugh on the comparison of Kev to Jenny and Jim.

    Sorry to keep correcting you, but I didn’t compare Kev to Ms McCarthey and Mr Carrey.

    I compared GR’s action of naming them “couple of the year” to a hypotheical action where I would give Kev an award.

    Very different.

    From where I sit, Kev is a leader of a type totally unmatched by the “couple of the year”. Kev has influenced the discussion, both directly and indirectly. He has become an important voice without relying upon money or celebrity. He also is untainted by financial conflict of interest, as Jenny McCarthy is.

    I hold Ari Ne’eman, CS (too name two on this post), and many others who comment here and elsewhere in similar high regard.

  21. Anne January 10, 2009 at 06:20 #

    I just listened to the Obama transition team’s response to the second round of “Open for Questions.” They responded with a video of incoming White House Press Secretary Robert Gibbs answering select questions. You can listen to it here.

    Gibbs didn’t address any of the autism questions, but he did answer one about improving science education in schools. He said:

    “I heard the President-Elect say many times during the campaign that it was time to put science back into our decision-making process and to finally have scientists and engineers involved in policymaking decisions every day in the White House. He’ll restore science to our decision-making process, put real scientists in charge of things in the White House, and make sure the decisions aren’t based on ideology, but on facts.”

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