The anti-vaccine movement frequently complains that the medical establishment doesn’t spend enough time listening to parents. Sometimes the news and entertainment media take the bait.
“It is impossible to overlook the larger and direct dangers inherent in (Jenny McCarthy’s) position on vaccines,” wrote Karl Taro Greenfeld in Time Magazine last winter. “Yet it is equally difficult to ignore the emotional core of what she is saying: Listen to parents. If doctors won’t, then McCarthy will.”
The “parent as victim” meme is the donkey that pulls the anti-vaccine cart. McCarthy speaks lovingly of her “angry mob”. Generation Rescue founder J.B. Handley boasts of harnessing that anger to “bring the U.S. vaccine program to its knees.”
But last week, a member of the “medical establishment” was listening to parents at the annual AutismOne confab at Chicago’s Westin O’Hare. What happened next shows us that the “emotional core” of Jenny McCarthy’s angry mob is as hollow as its science.
A staff member of a western state department of public health was reportedly attending a session on vaccines and parental rights. According to one source, the speaker was advising parents how to apply for and receive vaccine exemptions. The session was interrupted by an AutismOne organizer who commandeered a microphone to announce that a state health department staff member was present, so parents should be careful about what was discussed.
A short time later four Westin O’Hare security guards entered the room, identified the staffer, and directed her to leave the conference facility.
On the way out, the ejected staffer asked to use the restroom. She was told that was OK, as long as an AutismOne volunteer accompanied her to the ladies room.
An email to an AutismOne conference organizer sent Thursday afternoon, asking for comment, has not been answered.
It gets worse.
Saturday morning, Chicago filmmaker and independent journalist Lars Ullberg was tossed out of the Westin O’Hare, a mere ten minutes after planting himself on a seat in a lecture hall.
“They wouldn’t even talk to me,” says Ullberg, who had paid to attend after being refused a press pass. “She (conference organizer Teri Arranga) just kept reading their ‘right to eject language.'”
The AutismOne website states “We reserve the right not to register any individual based on our own judgment. We further reserve the right to ask any participant to leave the conference if that person’s conduct substantially interferes with the participation of others.” Ullberg said no explanation was given for how his conduct (i.e., sitting in a chair) was interfering with others.
Prior to attending, Ullberg had received an email from Arranga, spelling out the conditions of his attendance that would make Dear Leader proud:
Autism One is not prepared to offer press passes to you or your crew. Although you and each of your crew members may pay the registration fee as regular attendees, subject to the usual terms of attendance, neither you nor your crew members are permitted to conduct any videography, photography, audio recording, or press interviews; furthermore neither you nor your crew members are permitted to quote attendees, presenters, exhibitors, volunteers, or staff in any manner that will be quoted, “on the record,” or used for public or private media or instructional purposes. Additionally, you and your crew members must identify yourselves accurately with your affiliations to those to whom you speak and also not mislead them to think that you are simply seeking information with which to help your child. Finally, you may not eavesdrop on private conversations between attendees. In summary, Autism One grants no permission to you or your crew to report on this conference or its attendees. Should we become aware that you are not following these guidelines, we will not hesitate to ask you to leave the conference.
“My hope was they would actually have a conversation with me,” says Ullberg, who says many of the presenters at AutismOne are making legitimate points. Apart from quack medical claims, some speakers addressed behavioral therapy, respite care, educational strategies, and other mainstream parent concerns.
“We can’t learn if we don’t listen,” he added.
14 responses so far ↓
1 Mike Stanton // May 30, 2010 at 1:45 am
They are displaying a siege mentality as well they might. First the Omnibus decisions, now Wakefield at the GMC, and a media that is finally asking questions of them rather than uncritically “listening to the parents.”
2 KWombles // May 30, 2010 at 5:17 am
It makes the AoA’s refusal to allow contrary opinions on their site look open-minded; they’ve not closed the site to only vetted and approved eyes (that would no doubt hurt their revenue).
It does seem clear, though, that if you can in any way be identified as anything other than a gullible, in-full-compliance-with-the-vaccine-theory parent that you won’t be welcome at Autism One.
3 Broken Link // May 30, 2010 at 6:32 am
ANB, there’s something totally ironic at AoA today, entitled “Katie Wright: And Autism Mom Goes to IMFAR”. Of course, her main theme is how IMFAR and the researchers are not listening to parents. But she also describes what she sees as the difference between conferences such as AutismOne and IMFAR.
Here’s what she says about a DAN! conference:
And here’s what she says happens at IMFAR:
See, Katie, that’s the difference between civility, respect, openness and eagerness to learn on one part, and a mob reaction to being whipped up in an echo chamber, where true dissent is not allowed.
4 codeman38 // May 30, 2010 at 9:08 am
@Broken Link: Personally, it strikes me how much more autistic-friendly AoA’s description of IMFAR is compared to DAN!…
5 Liz Ditz // May 30, 2010 at 10:06 am
It seems to me that the AutismOne organization made a tremendous PR blunder by allowing the California Department of Public Health staffer and Ullberg to register and then evicting them. From a reputational point of view, it would have been far better to refuse their registrations.
I wonder what the payoff was for accepting the registrations then evicting them? Some sort of theater for the attendees? See, we protect your safety by removing these dangerous dissidents! . I don’t know.
6 David N. Brown // Jun 1, 2010 at 10:41 am
Ejecting people could serve to reinforce paranoia among anti-vaxxers. Then again, it could also serve as a means to discourage dissent by fellow “anti-vaxxers”. In any event, I suspect it will have made a poor impression even on many who favor anti-vax views.
Somewhat offtrack, but does anyone have an idea how many people were at AutOne?
7 Graphictruth // Jun 1, 2010 at 5:48 pm
When you make it clear that nothing less than uncritical, positive coverage is what is required to gain a press pass – the reputable press will not be bothered to attend.
By the way, publicly embarrassing a state employee? In a political machine town like Chicago? Brilliant.
8 kara-noel // Jun 5, 2010 at 12:42 pm
I’m popping around blogs because my niece was just diagnosed with AS (at 12).
So interesting about the kicking out of the conference… you are right if they can’t listen nothing will be resolved!
9 Julie // Jun 18, 2010 at 5:44 am
I am a bio-med mom with a girl with the dual diagnosis of down syndrome and autism, and I attended one day of the conference. When I read about this situation on your blog, I thought, “Great. What happened, and why were these guys kicked out. It makes us look bad.” But one of the regular volunteers explained that last year, there were reporters being very disruptive and harrassing the lecuturers. They only attended the biomed sessions and were not there to present a favorable side to things, it was bad. This year was a reaction to that, to protect the attendees and guarantee that that would not happen again.
I understand that you think we don’t want to be heard, but we do. At least all of those who I speak with do. And just so you know, biomed DOES work. Even my daughter’s teachers and therapists have said that the drastic difference in her HAD to be from the supplements and special diet that we implemented in her. It may not have a double blind, placebo controlled study behind it, but it works.
10 autblog // Jun 19, 2010 at 8:10 pm
Julie, are you saying that a reporter was expelled from AutOne last year (2009)?
11 Julie // Jul 4, 2010 at 8:12 pm
No, not that I am aware of. Just press harrassing speakers and being disruptive during some of the talks.
12 autblog // Jul 5, 2010 at 7:20 am
Can you give examples? Or are you just repeating hearsay? I’d not heard that reporters were intentionally harassing and disrupting speakers. You’re talking about the 2009 conference, right?
13 Chris // Jul 6, 2010 at 7:38 pm
You might be interested in this opinion of Ms. Arranga.
14 autblog // Jul 10, 2010 at 3:40 pm
Very interesting. Teri Arranga is, apparently, a liar.
Leave a Comment