Sunday, December 04, 2005

THE MERCURIAL MR. HANDLEY AND CYBERSILLINESS

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, JP, and Autism Diva. The similarly named sites sent users to the Generation Rescue site.

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.

11 Comments:

Blogger Kev said...

To me, it comes down to an issue of maturity and responsibility.

What JB did was certainly immature but not necessarily irresponsible.

However, this small action is a microcosm of JB's behaviour in a number of places and at a number of times. And at times, those actions have crossed the line from childish to irresposnsible. Indeed, my main contention with GR is the point that their argument revolves around vaccines and chelation and they claim that autism is nothing else is dangerously irresponsible.

Some people don't see that as an issue but as its factually incorrect I see it as a big problem. How many times as a parent have you been seated across from some official (education, medical, whatever) or jst been trying to go shopping with your child and realised that the people you are trying to interact with have no real idea about the nature of autism? Thats down to ignorance. And its a state that I'm afraid JB is simply adding more stock to.

Less ignorance, not more is what autism needs. That means less bull-in-a-china shop, less agression, less posturing, less heavily marketed errors and more tolerance, more willingness to listen and more willingness to be flexible.

This issue was never about domains - its about what it reveals about the nature of someone who has a lot of power which he is not using as wisely as he could be.

12/4/05, 2:56 AM  
Blogger Anne said...

Never mind JB. And Proffit Motive is a non-event. After reading your latest post, I want to talk about your statement that you are linking to sites that represent important voices in the discussion we should be having about autism.

As far as I can tell, there are no sites by autistic people in your links! (Please correct me if I'm wrong.) You have your toe in the water with Neurodiversity and Left Brain/Right Brain, and they are great sites, but they are parents' sites.

So let me howl and gnash my teeth about this -- why are autistic voices not important?

12/4/05, 1:23 PM  
Blogger Wade Rankin said...

Anne brings up a very good point. I am still discovering some sites by autistic people, and I probably will link to some. Others I have already decided not to include in my links. In at least one case, the deciding factor for me was the lack of a respectful tone. That may strike you as maintaining a double standard, and it may be. But it is my editorial prerogative. And until I see my blog linked in their sites, I fail to see any ground for complaint.

12/4/05, 1:50 PM  
Blogger Wade Rankin said...

Anne:

While we're on the subject, do you have a good URL for jpsey's site? The one I had just brings me to a blank page.

12/4/05, 2:16 PM  
Blogger Anne said...

jypsy took her main site down earlier this year.

This is what she left up:


The Autistic Adult Picture Project
http://www.Isn.net/~jypsy/AuSpin/a2p2.htm

Our Names Are Autism Too
http://www.Isn.net/~jypsy/AuSpin/ournames.htm

Autistic Success - My brief submitted to The Senate Standing Committee on Social Affairs, Science, and Technology
http://www.Isn.net/~jypsy/AuSpin/senate05.htm

LEADERSHIP IN THE AUTISM COMMUNITY - Values, Methods, Standards, and Goals by Michelle Dawson
http://www.Isn.net/~jypsy/AuSpin/lead.html


Autistics Reject Disrespect and Defamation
http://www.Isn.net/~jypsy/AuSpin/disrespect-defamation.htm

The Autistic Community - Online Communities created *By and For* folks on the Autistic Spectrum
http://www.Isn.net/~jypsy/AuSpin/community.htm

SIGNATURES OF INTOLERANCE Responding to the Petition Against Autistic Canadians
http://isn.net/~jypsy/AuSpin/sig.html

Alex's Running Page
http://www.Isn.net/~jypsy/run.htm

12/4/05, 3:05 PM  
Blogger Kristina Chew said...

Another site:

http://kathleenfasanella.com/aboutme.html

Kathleen Fasanella wrote to me early on in my entrance into the blogosphere.

12/6/05, 5:15 PM  
Blogger Kristina Chew said...

And regarding us parents speaking so much for our children on the spectrum, I don't think I'm alone in thinking from time to time, how much of this is me, and how little can I really speak for Charlie?

But I'm willing and ready to be wrong. And I'm glad Injecting Sense doesn't shrink from (excuse the metaphor) making some stabs and jabs into all these issues. The unexaxmined life is to be avoided, indeed.

12/6/05, 5:20 PM  
Blogger Jeffrey Allen Trelka said...

This comment has been removed by a blog administrator.

12/20/06, 4:06 PM  
Anonymous sploobie said...

And in turn, Ms. Clark decided to post details of my personal life in some rather odd effort to slam me. Do the ends justify the means, Camille?!

12/20/06, 4:09 PM  
Anonymous Agatha said...

As a recently diagnosed 56 yr old aspie.. Handley is a self centered NT loon. I love being an aspie. Did not know I was one for 56 yrs.. I surprized many a psychologist and people. I learned NT fluently. Aspies and auties are usually far brighter than most NTs so we have to learn their Operating system to communicate. No vaccines are not responsible. My family and many other families are proof.. I have 3 aspie friends all diagnosed in their 50s.. no vaccines.. One has 2 sons with aspergers.. we do quite well.. in fact we are very successful and happy in life. its all genetic in my family since 1860s.. Aspies are brilliant and we just have different operating systems than NTs who are like Handley.. I rather be me than him any day of the week.

2/9/08, 12:03 AM  
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