Censorship, Incivility & Chronic Suspicion · Jul 18, 05:47 PM

I received an email this morning from a mother who visited Neurodiversity.com for the first time, read my letter to David Kirby, and had a few things to say.

“Normally I would love to have found Your website… but once I read Your open letter to David Kirby I had to ask Myself How You could hope to censor others when You Yourself have the freedom of speech… So go out on the rooftops and scream that Your child was not injured due to this but Please dont be ignorant enough to berate others for feeling the way that they do… I neither approve or disapprove of David Kirbys book and I dont recall Him using either of our names in His book so I will just have to assume that He actually meant what He said when he said ‘some’ parents feel this way…”

These statements betray a basic and unfortunately common misunderstanding of the content of my letter, and my purpose in writing to Mr. Kirby.

I do not not support censorship, nor do I have the power to censor anyone. I am a private citizen, not a government agent, and would never call for any government restriction on a person’s right to express their opinions. My concern is not that people dare to speak their minds; rather, I seek to address the content of their speech.

I continue to be dismayed by the profound hostility of many members of the Evidence of Harm discussion list — the nerve center of the ongoing autism=poisoning crusade — not only towards individuals and organizations they feel are responsible for damaging their children, but also towards other parents like me, whose only crime is that we have come to different conclusions about our lives and our experiences, have made different parenting decisions, and may have shared those conclusions and experiences and decisions openly. The crusaders also display considerable hostility towards professionals who express any doubt that most instances of autism might be a consequence of vaccine damage; this includes thousands of ethical, conscientious scientists, health care providers, educators, and others who have dedicated their careers to promoting and safeguarding the welfare of children in general and people on the autistic spectrum in particular. Parents may be under stress, they may grieve their children’s disability, and they may hate the people they believe brought such challenges to their lives. “Professionals” may be passionately committed to their theories and their ideology and their customers. However, these do not excuse personal attacks on those who have done nothing to contribute to anyone’s difficulties.

Undoubtedly, my letter does not paint a flattering picture of many participants in this campaign, but it is a picture of verbal abuse painted with their own words. It is not itself an attack, but a protest against attacks that have been perpetrated by people who profess humanitarian motives. Their words are not simply characters on paper or on a screen, but hostile sentiments blasted out in a steady torrent towards members of a larger community whose interests they claim to represent. I wish I could say that the tone of discussion amongst the campaigners has improved, particularly with respect to parents who do not contend that their children are autistic because they have been “poisoned.” Unfortunately, the attacks and slurs continue.

For instance, this comment from a post made to the Evidence of Harm list just two days ago — “In my son’s school… there are many children who are autistic, and sad to say, none of the other parents in my son’s class are doing anything to help their children.” This is the persistent, prevailing attitude there towards parents who don’t choose to pursue biomedical treatments with our offspring — we are presumably “doing nothing to help our children.” Indeed, some parents may “feel that way” and want to “vent,” but unfortunately, they are doing so not within the privacy of a support group, but in the context of a political action campaign.

All too often, the campaigners behave like a pack of bullies, automatically targeting anyone who succeeds in arguing an opposing point in an intelligent and persuasive manner, assuming that they function as a cog in a vast conspiracy to undermine children’s welfare and thwart their political agenda. For instance, on July 3, an EOH list member posted a letter to the editor of a newspaper in the Midwest, along with the address and phone number of the letter-writer, encouraging other members to “call this bitch.” Another member chimed in, happy that someone was willing to educate her, and rejoiced that “Now I can actually call her and tell her the things I said about her this morning. You made my day.” Although the list owner promptly expelled the instigator of this drama from the list, and other members agreed that it was inappropriate to use the list to launch personal harassment campaigns, the investigation into the supposed “vested interests” of the letter-writer continued, spearheaded by Lujene Clark — not just “ground troops,” but founder of No Mercury, and a very prominent participant in this campaign. Mrs. Clark advised list members that “the most productive approach is to do our homework, investigate (her) connections and expose those to the editor and public.” She subsequently made several posts offering bits of personal information about the letter-writer; based on her maiden name, list members speculated about whether she might have “ties to the Bushes, Skull & Bones, Brooking Institution, Brown Bro Harriman,” and suggested that it might be a good idea to access the LDS database to do a genealogical search. Mrs. Clark eventually stayed up the entire night doing online research on this person, referred to by her husband Dr. Alan Clark as one of “our recent bad actors in the press.” She eventually posted to the list more personal information, called her “a yuppie who lives an upscale, charmed life,” and speculated that her husband “probably has a lot of (his) clients invested in pharma stocks and is protective of their profitability.” The discussion ended with another member’s comment, “There you have it. Just another member of the consortium of the ruthless preservative republican corporatists spouting their vacuous spewage.” (Many of the referenced posts have been deleted from the online EOH list archives, but were published in the digests.)

This is not just an isolated instance of this kind of behavior. On July 9, a mother named “Deb” signed on to the list and tried to participate in a conversation about vaccines. In her third post, she included some information taken from a Seattle/King County Health Department brochure. The other list members began to speculate about who this newcomer might be, making comments like,

“Who is this person? How did she get in this group? This response seems to ape the party line handed out by Big Pharmacy,”

and

“If you believe the talking points below… I have a bridge I want to sell you and the troll sitting under it.”

Lujene Clark promptly concluded that “Deb” must be Deb Wexler, the head of the Immunization Action Coalition, and proceeded to offer a lengthy list of names of people with whom “Deb” was presumably in cahoots. More insults followed, including,

“Hey moles, it is fitting that are included in the broader class of species, ‘rodents.’”

“Why I am ‘Queen Debbie,’ the thimerosal fairy!”

“I asked for clinical studies and she came back with the pablum below.”

“God bless people like you who are ruining generation after generation.”

Eventually someone correctly identified the new member, and tacked on for good measure that she was, “Just a mom with a crummy website.” One member corresponded privately with “Deb” (who unsubscribed from the list after this group bullying), suggesting that she try out a “pro-vaccination” group; other parents justified their hostility with excuses like,

“you’ll have to forgive us for our shortcomings but I know you share our frustrations as well as our need to vent from time to time.”

“I think this group is a hard-core, pissed-off bunch of people and I LOVE IT!... it’s not so easy sometime to take the high road.”

and this bizarre statement from an American chelation doctor who runs a clinic in Brazil:

“I think we have to find a way of non-violently ripping the heads off of quite a few people who will lie and continue the chemical rape of our children.”

“Deb” was accused of being “insensitive,” and of being “naive, probably new to the internet, and insulted the group with her post,” when she had only posted information that she thought might benefit the discussion.

To their credit, a couple of list members eventually spoke about the need for civility, but there were plenty of others who had no problem flaming a new list member, mocking her and insulting her and calling her names, simply because she hadn’t been around long enough to be completely familiar with their biases. Such viciousness is not only a problem with a few “loose cannons” peripheral to the anti-thimerosal campaign, but also with individuals who are right at the heart of it. I would like to encourage anyone associated with this crusade to raise these issues with their comrades in a meaningful way, for no good can come of a supposedly “humanitarian” effort that is fueled by so much emotional toxicity, and which casts as “enemies” so many people of good will.

Comments


  1. Love your website and blog! As a parent of a 5 year old with autism, it is wonderful to see such an eloquent expression of both my distress at how the mercury debate has evolved and the importance of treating all people with respect. Thank you!! (I also happen to be a PhD health services researcher for the government, and while there is plenty we don’t know about autism, I am certain that there is no way that the CDC, the IOM and big pharma could conspire to do jack.) — Bridget    Jul 18, 07:17 PM    #

  2. Its not just on EoH either. Have a look at a recent thread on my blog. Because I don’t want to chelate or even treat autism, a certain type of person is horrified. What toxic attitudes they pass on to their kids. — Kev    Jul 18, 09:11 PM    #

  3. Hi

    Yeah, that sounds about right for the EOH. As we say in these parts – ‘They’re a weird mob’. Quite apart from the mandatory group think, they seem oblivious to the consequences of having discredited medicos allied with their cause.

    As for your letter writer- I’ve noticed that critical thinking is not all that easy for some people brcaue they probably do find it hard to let go of personal feelings. Everything for them has a personal feeling filter and they don’t really understand that for other people that’s not the case. — Alyric    Jul 19, 12:37 AM    #

  4. Censorship?

    What a bizarre charge. Even David “I’m busy” Kirby hasn’t accused anyone of that.

    Well, maybe it’s just typical for the weird mob. Autism Diva pictures foaming-at-the-mouth villagers with torches.

    The EoHarm group is fascinating to watch, if a little creepy.

    Thank you, Kathleen.

    Autism Diva — Autism Diva    Jul 20, 01:14 AM    #

  5. Writing a rebuttal to someone else’s opinion is not censoring that person’s opinion. It is only exercising the same right to free speech that the other person has. — Quartz    Jul 24, 03:27 PM    #

  6. It all feels a little bit like a Salem witch hunt to me. I am interested in the science behind autism, but not all the hype.

    Most importantly, for the sake of our children, we need to learn to accept and celebrate their differences. Parents of autistic children have been given a great gift if they choose to receive it. If they don’t, their lives will be a living hell. That’s what I sense most from these angry hateful parents. . .they’ve chosen hell. — Nadine    Aug 1, 08:13 PM    #