Friday, June 04, 2010


Last week was the combination of the Autism One Conference and the American Rally for Personal Rights. I was very involved in both, and I am justly proud of both events.

It’s been fun to see some of the commentary from bloggers on “the other side” of the issue ⎯ some, but not all, of whom were at the rally. They mischaracterized what was said; one pulled a juvenile prank; they trumpeted their bravery in showing up; but most of all, they just seemed incapable of counting.

The estimates from the neurodiversity and “skeptic” bloggers grossly underestimated the size of the crowd in a range of “100 or so” to “less than 200.” The smallest of those estimates came from Ken Reibel, who apparently was trying to dispel the myth that everyone on the spectrum is a math genius. Based on his blog post, he seemed to base his estimate on the fact that we had lots of bananas left over (those bananas were available in plentiful supply after being donated by a kind sponsor). Ken went so far as to address a comment to me on the previous post, asking if I was disappointed in the attendance. The short answer is “not at all.”

Every permit application we filed with the Park District and various City agencies (and I should know; I personally completed, signed, and filed each of them) clearly stated that we expected no more than 500 people, including “bystanders.” Indeed, if we had received the “thousands” of attendees one blogger said we were expecting, we would have faced some pretty stiff fines and penalties. The fact is, we anticipated anywhere between 200 and 500 people, and we had attendance in that range. And that was pretty good for a Wednesday mid-afternoon in downtown Chicago. Add to that the hundreds that joined on-line, and this inaugural event for the Center for Personal Rights did quite well indeed.

Some internet wags, who weren’t there, based extremely low estimates on what they saw on various movies or on the internet feed. Of course, most of those were shot from the middle of the grove, where the fewest number of people were congregated; most chose to sit off to the side in the shade (the day was quite hot).

So Ken Reibel based his estimate on the number of bananas left over and the fact that not all of the prepared signs were used. (The rally had 150 signs prepared; 100 were used; about half of the crowd held signs, and about one-third to one-half of those were signs made by the participants rather than provided by the rally. You do the math.) We chose a slightly more primitive method of crowd estimating. We counted people rather than fruit. I cannot represent any of our counts as being completely accurate given the roaming nature of the attendees at an event like this, but everyone who actually attempted to perform a count came in with a consistent figure of over 300.

What makes the underestimating of our attendance all the more comical are statements by those same commentators grossly inflating the number of “counter-demonstrators” there. In truth, it was the least demonstrative counter-demonstration one could imagine. Approximately five students stood on the sidewalk and passed out “Hug Me, I’m Vaccinated” leaflets to passers by. And of course, there were a few self-styled “infiltrators,” who have been quick to pat themselves on the back for their bravery on their various blogs, etc. We were more than willing to tolerate their presence provided they behaved civilly, and they did for the most part.

The one exception was the woman who gleefully approached Dr. Wakefield, pretending to be a fan so she could pose for a smiling photo, after which she passed him an insulting note. Don’t get me wrong, I’m as big a fan of sophomoric humor as the next guy. But it seemed an inappropriate act for someone who claims to be appalled by the societal dangers of making vaccination less-than-mandatory, particularly in the shadow of a stage where there were personal stories of death and crippling consequences of vaccines administered to susceptible individuals.

And that brings me to what I really want to write about rather than the side issues trumpeted by the rally’s detractors. The program was outstanding. To be sure, we heard experts in the law, history and public health give us solid intellectual reasons for viewing vaccine choice as a fundamental human right. And the main attraction was, of course, Andrew Wakefield, who has been sacrificed by the medical community he has served so well on an altar to the public-health establishment. But the true impact came from the people who were able to tell us in an all-too-personal way just why an inflated and mandatory immunization schedule presents a danger.

We heard from Amy Pingle, whose teen-aged daughter now breathes through a tracheotomy and is fed through a tube, all because of an adverse reaction to the Gardasil vaccine. We heard from Capt. Richard Rovet (U.S.A.F., Ret.), who as a nurse in the military saw what amounts to nonconsensual experimentation, and he kept records of thousands of adverse reactions to those who serve us. Capt. Rovet tearfully described watching one of his friends die as a result of one of those events. We heard from Alex Hintz, a brave 13-year-old boy, who has been recovering from a vaccine injury. We heard from Allen Tate, a college student (and an outstanding young man I got to know), telling the world of the vaccine injuries to his two siblings.

Those personal vignettes were not intended to deter anyone from making a choice to not vaccinate. Rather, those speakers merely laid out what we have come to know; adverse events do occur, and more often than the vaccine manufacturers, medical associations and public-health authorities want to admit. And if there is a risk, there must be informed consent. The current religious and philosophical exemptions ⎯ an all-or-nothing approach not even universally recognized ⎯ are insufficient to protect the fundamental right to choose what foreign substances we place in our body in the guise of medical treatment.

High-quality videos from the rally, with minimal editing, are starting to be posted on the official site, and should also soon be available at F.A.I.R. Autism Media.

Before closing this post out, I also need to say a few words about the annual Autism One Conference, also held last week (this year, with additional participation by Generation Rescue).

I really didn’t get to attend many of the sessions this year, as I was being kept pretty busy in my role as a volunteer for the conference. My wife, who coordinates the medical treatments in our house, made quite a few (and also presented a couple of times). The presentations I did see were all informative, and the presenters made themselves readily available for questioning.

Beyond the formal sessions, however. Autism One has always provided an amazing atmosphere for attendees. Parents are made to feel supported, and children are free to be as autistic as they are, without anyone batting an eye. Even recognizing the fact that most of us would have preferred to forego the necessity of meeting under these circumstances, I have made friendships that will last the rest of my life.

My thanks to Ed and Teri Arranga, Laura and Shawn Rowley, Lisa Rupe, and a host of incredible volunteers. I consider it nothing short of a privilege to have been a part of the AO family this year.

Even Ken came to support vaccination choice, informed consent, and parental rights!