It’s been quite a week in the autism blogosphere. And at the center of the “firestorm” (as Kevin Leitch
called it) was none other than J.B. Handley, the co-founder of Generation Rescue
Around the time I was trying to explain that I do not subscribe to everything said or done by Mr. Handley and Generation Rescue just because I have the audacity to actually say positive things about him and it, Mr. Handley’s recent cyberprank came to light. For those who have been away from their computer for the last week or so, Mr. Handley purchased domain names that were similar to the names of blog sites of Orac
, and Autism Diva
. The similarly named sites sent users to the Generation Rescue
After much howling and gnashing of teeth -- too much howling and gnashing in my opinion -- JB issued an apology to Autism Diva and relinquished one of the new domains to her, but retained the other new domains. You can read JB’s explanation for yourself -- and judge that explanation for yourself -- in the comments to Ginger’s post
on the subject. As for myself, I will not judge JB or his actions one way or the other.
In general, I agree with Ginger’s assessment of the man:
The picture that I am getting of Handley is of a well intentioned, pissed off bull in a china shop. He is mad about what was done, and is being done, to his, and other autistic children; and he is pushing back with his full weight to fix the problem. ... and he has a lot of weight to throw around.
I understand JB being pissed off; I’m pissed off too at what happened to my son and the children of others I have come to know. My anger tends to get channeled a little differently than JB’s, but I certainly understand where his attitude comes from. Still, there’s no denying that JB, on occasion, has pushed the envelope of civility.
Did he cross any lines by purchasing domain names that three bloggers chose to leave unprotected? The on-line debate that sprung from this incident has included accusations of legal, or at least ethical, breaches. Those accusations might be accurate if JB’s intent was to deceive unsuspecting surfers into thinking they were visiting a blogger whose viewpoint is distinctly different from that featured on the Generation Rescue site. I doubt, though, that was JB’s intent. He strikes me as being intelligent enough to understand that nobody is going to believe that Orac, JP, or Autism Diva would ever endorse the Generation Rescue site.
That being the case, I see JB’s little prank as being humorous, albeit a tad sophomoric.
Speaking of humor that some might find sophomoric brings me to the other big event in our little corner of the Web: the appearance of The Proffit Motive
. All of a sudden a blog parody appeared, the name being an obvious nod to that noted defender of vaccines and thimerosal, Paul Offit. One section, lampooning the owners of the former blog entitled supportvaccination.org, exceeds the boundaries of propriety and acceptable satire. Other than that one section, however, the site is wickedly funny, and includes faux comments from stand ins for various familiar names. The objectionable section of the parody managed to open the site up to great criticism, and the critics predictably placed the blame on Mr. Handley. Never mind that JB denied any involvement. And never mind that the satire of The Proffit Motive shows a bit more subtlety than is JB’s style. In the eyes of some, J.B. Handley has become the de facto
cause of all things unsavory in the ongoing discussion of autism, its causes, and its treatment.
J.B. Handley has become a much larger figure to those who disagree with the biomedical community than he is within the community. He has become an obsession to many who ignore what some of us have to say, preferring to believe that we are all Generation Rescue clones who believe exactly the same thing. Well, I am getting a little tired of being told what I believe.
As I have said on many occasions, I disagree with JB and Generation Rescue about the contention that autism is nothing more than a misdiagnosis for mercury poisoning. I believe that autism is autism, and is caused by a combination of genetic and environmental factors. Nevertheless, it bears stating that I believe that the most prevalent environmental trigger for ASD in the recent past has been mercury, particularly in the form of thimerosal in vaccines.
With the “misdiagnosis” theme being so prominent a part of the Generation Rescue site, and with JB’s tactics and rhetoric being so extreme at times, some suggest that I should disassociate myself from JB. The first time that was suggested, my immediate reaction was that there was no association to “dis.” I have never met JB, I’ve never spoken with him, and I’ve never exchanged emails with him. But it’s really not that simple; there really is an association of sorts.
First, the most obvious connection is that I have a link to the Generation Rescue
site. Frankly, that’s not much of an association. If you look at my links, I include several blogs that deal with ASD, and I doubt that you can find a whole lot of consistency of opinion among us. I even include links to Kathleen Seidel’s neurodiversity site
and Kev’s blog
, albeit in their own special section (primarily because I’m not sure how they would feel being “associated” with my other links). All of my links are there for a simple reason; all add an important voice to the types of discussions we should be having. That is, these voices would be heard if we all weren’t too busy with silliness.
So it’s not just a link that creates an association with JB. It’s really a matter of us sharing a goal. We both believe that our sons regressed needlessly into autism, and we both want to do something about it. We may disagree on the nature of the problem, but we agree on a major contributing factor. Moreover, we agree on the basic approach to intervening in our sons’ disorder to try and alleviate the resulting dysfunction -- or as we sometimes call it, a “cure” -- although we might not follow the exact same protocols.
JB and I might disagree on many particulars, and his style is certainly not mine, but there can be no denying an association. That does not mean I condone everything he has done or might do. It simply means that I will keep a link to his site, and I will keep the car’s bumper decorated with the “Autism is Reversible” bumper sticker my wife picked up from a Generation rescue table at a conference. It also means that if we ever meet, I will thank JB for what he brings to our struggle.