And so, the latest fire-storm in the autism blogosphere continues to rage. If you’re unaware of the story I’ll offer a brief recap (as unbiased as I can make it) before trying to offer up some commentary.
Briefly, JB Handley of Generation Rescue bought the domains supportvaccination.com, oracknows.com and autismdiva.com. Why? I don’t really know. On a practical level they can’t be doing him much good at all so one is left to consider the possibility that he did it as either a joke or to be spiteful. I sincerely hope that the team who is working on his search engine marketing hasn’t recommended that he does stuff like this as if they are then they’re moving him into the realms of what is termed as ‘black hat SEO’ – this refers to doing lots of bad stuff that is against acceptable internet policy to get a good rank on a search engine results page. The penalties for this can be severe if search engines catch you at it and include blacklisting the sites in question and terminating any associated AdWords accounts. From what I know of JB he loves to push the envelope a bit so I wouldn’t be surprised if he is doing this. He is playing with more fire than I think he knows about though.
Anyway, the unsurprising upshot of this is that most people on ‘his’ side of the debate think that a) his methods are questionable but seeing as he’s promoting such an important message the ends justify the means or b) that its downright hilarious. People on ‘my’ side of the debate (please note by using the phrase ‘my side’ I’m not assuming ownership of it) think that a) its all very childish and a bit sad or b) that what he’s doing is tantamount to willfully misleading people.
What are the definite results of JB’s actions? Well, he’s polarised two sides that were beginning to listen to each other a little better. He’s created a new battlefront where none existed before and he’s upset people.
Lets look at JB’s sides claims that even though his methods are questionable that its OK as the message he’s relating is so important the end justifies the means.
First, that is a very dangerous argument to apply to anything. If we call ourselves a society that has a moral base then ‘the ends justify the means’ is at best, ambiguous as a reason.
Secondly, lets look closely at what JB’s message actually is to see if it is indeed justifiable to use methods such as these. Lots of people, particularly JB’s supporters either don’t know or seem intent on ignoring JB’s message. It is this: autism is mercury poisoning. Not _may be_ , not _in some cases_ , not _might be triggered by_ but simply *is*. Now and forever. This is an absolutist position and its the main thing about Generation Rescue that I believe it is imperative to challenge. Why? Because autism is *not* only mercury poisoning. The vast majority of the information on the GR site revolves around the idea that thiomersal in vaccines causes autism. Lets leave the debate as to the scientific validity of that belief to one side for now. I’m quite happy to entertain the possibility that he may well be right. I’m equally happy with the science that as of this time, states that he is not. For my argument – its irrelevant. The fact is that even if JB is right and thiomersal does cause autism _it is not the *sole* cause of autism_.
Big deal say people – why does that matter? It matters because if that viewpoint comes to be accepted fact then the standard treatment for autism will become chelation. And seeing as it is a verifiable scientific fact that autism existed _long_ before thiomersal was ever used this would mean that there were a very large number of autistic children undergoing chelation totally unnecessarily. Question: Is it stupid or clever to subject children to unnecessary medical procedures?
The irony of this message is that it is a standard complaint of the mercury = autism belief system that they couldn’t get their Doctors to look beyond their narrow treatment options. This is _exactly_ what will happen should mainstream medicine ever accept the GR viewpoint that autism is mercury poisoning to the exclusion of everything else.
Let me reiterate once more – I have no issue with any group that calls for more investigation into the use of thiomersal in vaccines and that I’m glad that it is no longer in vaccines. I also fully accept that there are occasions that vaccines have damaged children. I also fully accept that mercury is a known neuro-toxin. What I do not want however, is for my daughters treatment to be a) enforced and b) an unnecessary and dangerous procedure when there is no basis for such absolutism.
So I ask you again Dear Reader – is JB’s absolutist message so good that it justifies his actions? Lets not forget that his actions also include name-calling (JB referred to friends of mine as ‘trailer dwelling coo-coo’s’ and me personally as a ‘wanker’ – a phrase for the non Brit-slang understanding amongst you that means that JB believes I masturbate to excess – roughly equitable to ‘jerkoff’ in US parlance I believe). This is as well as buying up domains that belong to sites that disagree with him.
Many claim that JB has apologised (although I fail to see where he apologised to me) and thus should be forgiven. I agree and disagree with that. I agree that for the debate to progress we all need to forgive and move on. However, this is not a one-off circumstance for JB. This is his MO. At some point, we have to stop making allowances and start holding people to account.
That said, up until this incident, I believed JB’s latest apology was sincere. I still hope it was.
People have also referred to JB’s behaviour as a bull-in-a-china-shop and expressed admiration for his go-get-em approach. I can’t see how such an approach is particularly admirable. Bulls loose in china shops breaking everything indiscriminately and certainly I feel less sure of the shaky common ground that had just started to be secured between the two sides. Lets also not forget _my_ message: that autism is not solely thiomersal poisoning and that bulls loose in _that_ particular china shop run the risk of doing very great damage to the delicate objects inside it.
Now lets move on to the point about upset. People from JB’s side of the debate cannot seem to understand why this action has upset Camille so much. As she is very much smarter than me she doesn’t need me to speak for her but I do wish to add my opinion as to why whats happened might cause her distress.
As a blogger who comments particularly on the science behind the debate she stands or falls on the accuracy of that science. If anyone was misled into thinking she endorsed the GR view then that person may well have further doubts about her validity. I hesitate to speculate as to whether or not that might be one of the reasons JB did it of course.
Secondly, there is an issue here of implicit control. An ugly image is called to my mind of a rich businessman laughing uncontrollably at the image of a less affluent woman as he dangles her on puppet strings. Fanciful? Yes. Exaggerated? No doubt. Based in some element of truth? I’m afraid I think it is.
Thirdly, again, lets look at the GR message and think about why those who are autistic particularly might not want to be associated with it. They believe GR is wrong. Further though, they see GR reducing who they are to a set of mercury related symptoms. Lets not forget that GR believe that autism is *only* mercury poisoning.
Once upon a time (in fact less than 40 years ago) psychologists ‘knew’ that homosexuality was *only* an illness that could be ‘cured’. How do you think that – at the time – that made gay people feel? Imagine a blogging community of parents desperate cure their gay adolescents (who ‘know’ that their children are just ill) – would gay adults be horribly offended and fight back? Or would they sit on their hands and do nothing?
For us parents, the outcome of this debate is very important – our kids depend upon it. For those people who are autistic, the outcome of this debate is absolutely crucial. Their continued survival depends upon it. I ask you once more: in an area of such vital importance, is the method really unimportant when the method denigrates so much? Is it something to be brushed aside as we smile indulgently at its instigator when its tantamount to an attempt to control a debate that affects peoples very right to exist?
Is this message so right that such a total lack of respect for a differing view is at best readily embraced and at worst tolerated in the way we would tolerate a favourite but slightly spoiled child?